Life After a Jefferson Fracture

A strange thing, HOPE!

2011-12-07T13:06:00.000-08:00

It's taken me a bit to get on here and get my blog up to date on what happened at the neurosurgeon's appointment....so here goes:

The minute I walked into the tall, tall building that houses the medical offices of OHSU (Oregon Health and Sciences University), I felt "right" somehow. It had to be a "God-thing" because I had a couple of tough experiences there a couple of years ago...but nope, everything was going well.

My neurosurgeon was on time, and when I and my husband went in, I was first interviewed by the kind physician's assistant who had interviewed me before, when I first visited that office in 2009. She visits with you, and then goes back to the surgeon and tells him all about what is wanted, expected, etc, so that he can be ready when he walks in. I had told her that I was ready to put it all into the surgeon's hands: if he says yes to a surgery, I will make a decision on the spot to have it done. If he says no, I'll walk out and not seek surgery again.

Therefore, it was not a surprise when he walked into the exam room and got right to the point: yes, you still need surgery and so, first, we'll get new imaging, and once that is done, I will go back to see him and we'll discuss if surgery is still the right thing to do. He wants to just fuse the C1 and C2. I asked him if he'd fuse to the occiput (skull base) and he answered that he prefers not to unless it's very necessary. He said that when he gets into the surgery, at a certain point, he can check it all to see if there is movement where there shouldn't be, and if so, then he'd fuse to the skull base.

My feelings about it are that I prefer he does go ahead and fuse the skull base, but I trust his judgment. I also feel that the fusion of C1 to C2 is certainly warranted since the last MRI where the radiologist reported movement of the C1 to the left, which is not good.

He was soooo nice, and said a few times that I will do really well with this surgery, that he will be helping me a lot, that alot of my symptoms will resolve. I am so happy!

So, right now, I'm waiting for my workers comp insurance to give the go-ahead to have the surgery, and then I can move ahead with the new xray; new MRI (regular) and then the SPEC scan which is an MRI done after a radioactive substance is injected into my veins. He said he was really liking his experiences with the SPEC. I had it last time and no problems.

I'm very excited about this. First of all, as soon as he spoke his words, I got misty-eyed, and tears came from my eyes. I realized as I went home that there was something HUGELY different in my life. Something felt so very changed to how I felt from the time I broke my neck, 7.5 years ago, until the surgeon spoke those words a couple of weeks ago. On the way home, it hit me what it was. HOPE. I have hope, something I have not had for many years. This surgery, believe it or not, will be the FIRST surgery ever that I will have had on the C1/skull base area, since I shattered it all April 9, 2004! The surgeon said it was high time someone helped me out. Lord, please bless this wonderful man!

All of your prayers were felt, believe me. The surgeon was like a new man, completely different from how he was 2 yrs ago. There was a sense of JOY in the exam room, when the center of attention, ME, was infused with happiness and joy that I would finally get stability at the craniocervical junction! The PA was laughing and happy; my husband was cracking jokes, per usual; the surgeon was joyful and tears were streaming down the cheeks of my face as that single emotion, HOPE, which had been missing for so many years, took up residence in my brain.

Thank you for everything and I will keep you posted.

The Bottom Line

2011-11-24T18:51:00.000-08:00

I finally found it! I've been praying and asking the Lord to reveal to
me what I can say to the neurosurgeon.

You see, I know them well enough to know that they want things concise.
They want the bottom line and they don't want to hear all about your various symptoms.

But, I just didn't have it, that concise message that adds it all up. Because I know he will ask me, "Why do you want surgery now?"

I suppose this might sound foolish to many. Why worry about something like this? Why let it eat away at you and keep you awake at night?

You see, when you have a brain injury, you worry that things will be asked of you, IMPORTANT things, that will need an answer. I do, I worry about it. Especially when it's concerning something really important to me!

I feel like I can relax when I have the right words down on paper. Because I have had the experience of not explaining myself well, and the neurosurgeon was in a hurry and he didn't want to wait for me to collect my thoughts!
His time is worth money and he exudes the air that tells me he has much more important stuff to do than wait for me to explain myself.

Well, whether the reader understands this or not, it is what I often wrestle with, but now, on a piece of paper in my kitchen, scribbled out in pencil, is "the Bottom Line!" I am 3 days away from seeing the neurosurgeon, and thank You, Jesus, You've given me the words I feel will work when I'm asked why I feel surgery will be good for me.

This is what I wrote:
The Bottom Line

I cannot keep myself from living Life.
I cannot keep myself from doing things, even small things, that I know will later on cause me a lot of pain and suffering.
I also cannot stay out of a car or pickup. Life really demands that I go shopping or to doctor appointments and other
things that require a ride in a car. I gave up driving long ago.

I honestly think a stabilization will help my problems with riding in a vehicle. The wobbling about, the motion of travel, will have less effect on me if I have a stabilization done at the cranio-cervical junction. I might even be able to drive again!

And I'll be safer in the vehicle with that surgery done, those rods and screws and plates and wires in place. In the event of a motor vehicle accident, I will have more to hold my head onto my spine!

AND, I believe that surgery will cause me to have less range of motion, which is just what I want. I believe that if my neck is held rock-solid, then I will not be apt to do those things that I do now, the things that cause neurological flareups. I will be more aware of not wanting to lift something heavy or turn in such a way that will cause anything to twist, turn or pop out of position.

These things are the bottom line. I truly believe, given my own awareness of my own situation, that a top-notch stabilization will finally put me into the right place, and keep me there.

finis

A couple nights ago...

2011-11-24T18:33:00.000-08:00

I am feeling so sick. It's the nausea I get from the pressure on my upper spinal cord, ie my brainstem. It's a "dry" nausea, I can have dry heaves and nothing comes of it. But the nausea comes every day and sometimes sticks around for hours.

Last night, I did a very, very bad thing!! I sanded down my dogs' toenails. I hold them on my lap and do the job with an electric moto-tool.

You see, I'm not wired to find reasons not to do something. I'm hard-wired to find a way to do it even if I'm sick. That was the way I was all of my life. Now, you can see only a faint shadow of the person I used to be. My weakness and the pain that wracks my body just puts a huge block wall in my way. It's been a long, long time since I've been able to really work hard, but each day, as I find a way to get through it, I look for that special, rare moment when there's a millimeter of strength to achieve something. That's all I hope for, each day, is some oomph that will allow me to do something that I really want to see done.

I can't afford a house cleaner or a yard worker and really can't afford to pay a vet to do my dogs' nails. But...I'm their owner and it is my responsibility to keep them healthy. So, last night, I felt pretty good, so I did their nails. I knew, knew well, that doing something that keeps my chin on my chest will produce some nasty symptoms soon to follow. I would think I'd weigh the known payback and simply not do it! But, I'm just hard-wired to do something if there's any chance in the world that I can do it. Which is not necessarily a quality...

So, tonight, after a day that saw me spending 3.5 hours in bed, due to painful weakness, I have been overwhelmed with the nausea. Pain at the back of the head...but also this wicked nausea. Ginger drops help but not tonight. I've taken a handful of tums, I drank 2 small glasses of milk, I ate a half a piece of bread with peanut butter, which often helps. But not tonight. I laid down in the dark...just took another oxycodone for the head pain...

and through all of this it seems silly that I still wrestle with the question that haunts me day and night: if the neurosurgeon offers me a surgery like he did last time, should I take it? I guess it wouldn't be a question so much if this neurosurgeon had not told me before, "You could die from this surgery."

She said the word, "safer!"

2011-11-13T12:18:00.000-08:00

Another step on the slow, long road...

Yesterday, I received in the mail the authorization to visit my neurosurgeon in Portland, Oregon, at OHSU. The next step is to get an appointment there, and "cowboy up" and go see him. I suspect he will first order new imaging, since the last imaging I had there is now over 1.5 years old. After those are done, then I expect to go see the good doctor. At least that is the way I remember it went before, over a few months in early 2010.

I've tried to explain for the reader my feelings about surgery. How I realize now that I have been afraid of surgery, and without knowing that, I've avoided it. The other thing that happens is my mind wavers hot and cold about surgery. I can't seem to keep it on one track. One moment, I am sure 100% of the reasons I need surgery and I want to go in right that moment.

However, another day, I think about not taking any risks and about going with the evil I know, ie no surgery.

I have come to also realize that a person can have constant central pain and pretty much get used to it. Unless I'm late taking the pain meds...or the pain is worse than even it is normally. But...my observance is that a person can become accustomed to Pain.

So, today, I went to the pharmacy to pick up my meds. Usually, my pain meds run out at different times in the month and it seems like I'm going once a week to pick up a refill. But, this month, they all fell on the same time of needing refilling, so there I was, picking up six bottles of pills. The young man at the pharmacy joked with me, saying, "I have to give you the BIG bag for all your meds!"

As I checked out in the front with something else I'd bought, the girl noticed my neck brace and asked, "Oh, dear, you hurt your neck! What happened?"

I am SO used to hearing this from strangers. Every time I go to town, in fact. So, to her, I answered, "Oh, I just broke it a long time ago. I've been thinking of going for surgery though."

And this girl said, "You mean with screws and wire?"
and that was an unusual question she asked, not one I'm used to hearing, so I looked at her more closely, smiled and said, "Yes!"
She said, "I think you'd be a lot safer."

Why would she say that? She knew no details of my situation. Why would she say something so knowledgeable and personal?

I believe that there are angels around us, and God uses them to give messages to us.
In the Bible, there are several examples of strange ways God gave messages to His people. A prophet once picked up the jawbone of an ass and it spoke and delivered the prophecy to the people. The Bible also tells us, "Jesus Christ, the same yesterday, today and forever." God is the same God as He was back then.

I smiled at this young lady and sort of said, "Wow." Then I told her how much that meant to me. She said, "I don't know why, it's just what came to my mind."

Safer...that word means a lot to me because I heard my son say this to me once, and I never could forget it.

It was about four years ago, and I was ready to go for the fusion surgery, the very one I am still seeking, and I was talking on the phone to my son. He said that he felt I should get the fusion because it would make me safer were I to experience a car accident. It made a lot of common sense to me.

As the reader knows, I never did get that fusion due to some political stuff going on at the hospital. I've left all of that behind now. But it does seem like warnings about car accidents have been sent to me upon several occasions.

Dr. Bolognese in NY told me once that I would die if I were in an MVA (motor vehicle accident) and had not had the fusion.

My son told me he felt I'd be safer in the case of a MVA.

The neurosurgeon in Portland wrote in his report to my primary care doctor that there is a "risk of catastrophic failure of the C1 in the event of a car accident."

Hmmm. I wear the neck brace almost always while in a vehicle. But it is not something I worry about.

I've again been in the throes of inner debate about a surgery and this sweet checker at Rite Aid told me out of the blue that I'd be safer if I got the fusion surgery.

Wow...

it might be coincidence. But I've been asking God to tell me more directly if I am supposed to get the surgery. And then this woman said such a simple, yet strange, response to my mentioning surgery.

It feels good to me. I'm going to chew on it for awhile, but right now, those words have made me feel more confident about getting the appointment in Portland.

I'll keep you posted.

Catchin' up!

2011-11-01T09:28:00.000-07:00

Okay, twice I typed out long posts and twice, when I hit the "submit" button, the messages were erased and lost and just plain GONE. It's frustrating!

I finally did, this morning, what I should have done all along: type, first, the post on a Word doc and then paste it onto the blog text box. So, here is what is going on in the neurological world of Virginia...

Ponderings about surgery, Sunday, Oct. 23, 2011

I have become "used to" the fact that my arms and hands are weak, and that goes for the rest of my symptoms, too. The symptoms are not mere nuisances, they point toward the progression of residual pains and signs that were left to me after my injury 7.5 years ago.

This morning, as I brushed my teeth, I thought about the times, at night, that I forego brushing, because I feel too weak to wield a toothbrush. And I noticed the painful weakness in my arms after brushing my teeth and a couple of quick swipes with a comb through my self-cut hair. My arms hurt and are so weak. This is definitely a progression.

Another one I can think of right now is the distinct feeling I get each day of my head, all 12 lbs of it, being too heavy for me to hold up any longer, and I seek out someplace, any place, to lie down and take away that stacked weight upon my spine and neck. Each day, I lie down for 2 hours or more, and the sensation of relieving that weight (of my head) produces often a euphoric reaction. An uncontrollable "AH" of sweet release.

[This reminds me of the "invasive cervical traction" I had done in NY several years ago. I've written about it all back when it was done, in November of 2007, but the procedure went thusly: They put you out for a few minutes while they put a halo on you, with the 4 screws going into your skull (through the skin); Then, they wake you up and sit you up in bed, and hook the counter balance weights onto the top of the halo, so they can pick you up by the halo. Then, they start stacking weight and asking if you can handle more, or if you reach a point of euphoria. And most people DO experience euphoria when that weight is removed. My husband's cousin in NY described this procedure as "draconian," and I would definitely agree!

I sat up in that position with the counter balance of 50 lbs holding me for an hour or so, while a CT machine went around me taking pictures and then several specialists pored over the resulting imaging on computer monitors nearby. When they had reached their conclusions, one of which was seeing for the first time that not only had I broken my C1 into 4 pieces, but I also had suffered Atlanto Occipital Dislocation (internal decapitation) at the same time, they removed the weights, and when the weight of my head once again was carried by the C1, it honestly felt like someone had placed a 50 lb. sack of feed on the top of my head! It was amazing how heavy my head felt, and if it happened to you, you would be surprised, too!]

Today, I definitely can feel the wobbliness of my upper C spine. When I'm well-rested and fresh, it is not as pronounced, but after being up and about for a few hours, each bump in the pickup, each snappy turn of the steering wheel (my husband drives, I do not drive anymore) keeps me well-aware of my cranio-cervical instability, and each bump or
turn adds up collectively until, all tolled, I have that dire NEED to lie down and get the weight off. I am always very aware of the weight of my head.

What do I hope to get from surgery:

The ability to drive again. Without a fixation, if I drive, my head is held in an instinctual,
strained, self-balancing fashion. In order to focus and see what needs to be seen, I hold my head still and steady, and this effort is a great one, which, again, collectively adds to the flareup that I will feel the next day, or that night, after driving.

So, I'd like the freedom to drive again. At almost 60, I can't help but think about my future and my "silver" years ahead. My husband is 11 years older than I am. We've been married 38 years this year, and it is my desire to be able to take care of him as we age, and not be a burden upon him. I would like my independence back, I have many years to live if the Lord "tarries."

Having lived with this instability for 7.5 years, I know things about it that no doctor can understand, and I know the tiny, the subtle, the secret ways I am affected by things. And I have a sense of what will help me. IF my neck and skull were affixed, I think that it will keep me from moving my head so much. I am told that I move my head around a lot when I am talking to someone (something I have, for years, tried to control). With that fixation, it seems common sensible to me that it would prevent me from that motion in the CC junction! It would control my movements in ways that my desire to control them or a neck brace can never do. And I think with a distinct "AH" how good I would feel if the movement at the CC junction were STOPPED! After 7.5 years? It seems like a heavenly thing to achieved a FIXATION that will keep things from moving around, especially my own movements as I do light housework or garden work, or even just chatting with a friend. The other day, I talked with my sister for 2.5 hours on the phone. Even though I was using a light-weight headset on the phone, just the action of holding my head relatively still and using the muscles and ligaments in the back of the skull that are put into action when I talk, altogether add up to a severe reaction to the seemingly benign action of talking! With a fusion, I believe I could talk again to family and friends!

I do not care about any loss of range of motion. I have restricted those movements of my head for years now. Right now, I love the thought of having bolts and screws and plates holding my head right where it needs to be! It's now, or never. I should have gone for it sooner, but in retrospect, I did TRY. I went to New York to see Dr. Bolognese in June of 2007 with every intention of getting a big fusion! I was pre-admitted to the hospital, had the hospital bracelet on my wrist, my friend from NY had already arrived in order to help me in the hospital post-op after my sister would have to leave to go back to work in NH.
I had the motor running and my foot on the gas! Until my doctor decided against me and basically dumped me as a patient!

And, naturally, that experience warded me off of neurosurgeons and surgery for four years now. It's understandable that I became afraid of surgery after that NY experience, but on the other hand, it's time now to let go of the fear and move forward into a chance for improvement.

I take gobs of pain pills. Nortriptyline, Oxycodone, Oxycontin, Cymbalta, Metanx, Lidoderm patches. And I use a lot of iced gel paks. I have a mobility scooter. I KNOW, without a doubt, that there is no natural healing for me. I am not going to see any improvement without mechanical interaction. No, instead, I will see progression, an increase in pain, weakness, and the many neurological symptoms I experience that are due to compression of my brainstem by the C2 odontoid bone.

IF my work comp insurance authorizes a consult with a neurosurgeon, my next journey will begin. A trip to Portland, OR for the consult. I imagine a myriad of CT scans and MRIs will need to be taken and studied. I put my trust in God and my head in the hands of Him and the neurosurgeon, if surgery is offered. I will try and keep the reader posted.

Confused...

2011-10-02T20:04:00.000-07:00

I pecked out a long post here to catch up with all that has occurred over the past five months, and I hit "post".... but it simply disappeared. Gone irretrieveably. It had taken so much gumption just to get it written out...and now it was gone. That was two weeks ago.

I'll try something short here first, to see if it will post, before I write something long only to lose it again.

My last post, I was on my way to the doctor at Swedish Hospital near Seattle. With hopes lifting me on my way and dreams of a nice neurosurgeon who would listen, who did not have arrogance and a big ego, and who would thoughtfully consider what could be done to help me.

Fat chance. He was almost as bad as the worst yet, this neurosurgeon the last in the litany of 8 neurosurgeons. He came in the door with his mind made up before even seeing me physically. He did not have more than a few minutes to go over the imaging I'd brought him when I arrived early for the appointment.

He announced that he simply never reads the reports of others. He makes his own decisions. Surgery is not an option for me. My symptoms are due to my Post Traumatic Stress Disorder.

Which only made me cry the harder and I could not stop even though my mind was telling me to stop. I hate crying! I don't want to do it, I am a darn strong woman and a child of the Living God, I shouldn't be crying but when this doctor opened his mouth to speak his first words, I could see that he was no different than most of the others I'd seen before.

He didn't care a lick about me. He pointed to the short version of my files that my PCP had sent him, and announced that I am a "trainwreck," and that NO doctor would ever work on me because they also would see I am a trainwreck waiting to happen.

I told him that the team of neurosurgeons at OHSU in Portland a year and a half ago had studied my imaging and had offered surgery to me. He told me to run as fast as I can away from them.

He was a jerk.

But, in the midst of being just who he is, I could see a positive. I now appreciate the docs at OHSU much more! I'm not in love with the neurosurgeon I saw there (3 times). That was why I was seeking a different surgeon. The Portland doc would not talk to me for more than 15 minutes. I did not see any effort on his part to create a connection with me which might reveal to him ways I need help. He simply did not want to offer me surgery, either, and said so adamantly. But, he did one thing that was either mechanical or heartfelt: he said he would have the whole neurosurgical team look at my imaging and would tell me on my next appointment what they all decided.

And when I went back to find out, this same doc burst into the exam room telling me: "You need surgery and you need it now! No doctor has done anything for you, you are very unstable (instability at the craniocervical junction) and you need rods, screws, plates and wires to shore you up!"

As I said, I decided to wait back then because this doctor, besides only allowing me to stay with him for 15 minutes, and, when I asked him to tell me more about the surgery, he told me he'd tell me more once I decided to go for it, despite those things, he also told me, "Now, you must be aware that you could end up worse after this surgery! You could become paralyzed. You could become a paraplegic. You could die! I do mistakes sometimes, you know!"

THOSE were the reasons I wanted to look elsewhere.

Now, I appreciate that team of docs at OHSU. And I think every day about surgery. This instability at the C1/skull junction is worsening. The CT of the C1 showed, according to the radiologist's report, that the C1 is moving, slipping to one side, allowing the bony finger of C2 to slip the other way within my spinal canal and thus crunch the brainstem...the pain is not good...and right now, I sit here just feeling neurologically OFF, I'm sweating bullets, swallowing problems have been worse than ever, vision is worsening, balance is worse.

I think of surgery every single day. Wondering if I can work up the nerve to go for it. Wanting a sign from the Lord but not getting one that I can read. I want to call up OHSU and schedule an appointment with a kinder, gentler doctor. I want to ask a nurse there just who she would recommend, perhaps to her mother, what doc would she want to treat her mom? Would they do that? Would they allow me to see another neurosurgeon? I don't know.

I need new glasses for sure, and I need to have my teeth fixed. I have a front incisor that looked okay, but it was very ouchy. I went to the small town dentist here locally and he was sick and a woman was taking his place, she drilled into the back of that tooth and accidentally drilled right through to the front! So, she pasted some junk in there that looks terrible. Yeah, I'm tired to the bone. I'm happy with life...but it almost feels like things are piling up too high.

The Lord will lead and guide me, I know. I keep waiting for His sign.

Thank you for reading!

IS it May 21 already?

2011-05-21T11:22:00.001-07:00

Are you ready for the rapture tonight? If you are a believing Christian, then, yes, you are!

But, is it going to happen? I'm "not feelin' it." But I don't really know because the book of Matthew tells us no one knows. And it also tells us that Jesus will return as a "thief in the night." Surely, everyone, believer and non-believer alike, knows about May 21 and the prediction that all Christians will be taken up into the sky to live forever with Jesus on that date. It's on TV and radio, the nightly news and billboards. I never saw a thief in the night come with so much prior publicity. But...shrug...maybe it will happen!

For me, I'll be so glad for that day. The only thing that will mar it is that so many of my loved ones do not have that personal relationship with Jesus, and if the Lord came back tonight, they would indeed be "left behind." But, that's their choice.

I did not intend to post on the rapture or "taking up" here just now, but that is what poured out of my heart. Now that I've obeyed God, I will post a couple of other things.

Two sad/happy losses to our Chiari and Christian family. The lovely, spritely Michelle McCollum has passed away. She died on May 18, I believe. Her son was born with Chiari, and her strong advocacy for his health issues led to many of us getting to know Michelle. What a gem of a person she is! Sadly, she was diagnosed with cancer several years ago and has been fighting such a battle ever since.

In and out of hospitals (the "in" days numbering much more than the "out" days, sad to say); at home being hooked to IV poles and other medication suspensing equipment.
I marveled as I watched her, through her emails and posts on the Christian support group, Healing Friends, supporting and encouraging on her son as he excelled in school athletics. She would drive him and other team members all over Texas, while, unseen, her body was challenging her at every turn.

Last year, her left leg was amputated. Infection raged through her body. She fought it all with grace and dignity and sharing with us her understandable human emotions.

We were shocked to hear she had passed to the other side! It seemed like she was doing somewhat better.

Michelle left behind her devoted husband, Brent, and 2 teenaged children, a son and a daughter. We miss you, sweetheart!

Last night, while searching for Michelle's Facebook page, my eye caught a post from Matt Harms. The topic of his post left no doubt: he was readying for his wife's services! What??? What happened to beautiful Becky??? I stayed up late as I searched FB and the web and read her obituary, and read all comments, pages and pages of them, on her FB page.

Becky Harms was 41. She died "at her home," the obit reads. Other than that, I do not know any more. I miss her so much.

Becky had her craniocervical fusion done at TCI at the same time I had my Tethered Cord surgery. She and Matt, two separate occasions, picked me up at JFK airport in NY and delivered me to their (and my) motel in Floral Park. We went out to eat one time together. Since Becky and I were both on the neuro floor at North Shore Hospital at the same time, I often toddled down the hall to her room to visit with her, and her husband Matt would come to my room and sit down and visit, often. Later, I learned from Becky that she had sent him down to check up on me. I was alone at the hospital for 3 days and those visits with Matt and Becky made me feel less alone.

A few times, we sat in each others' motel rooms and talked and talked. I remember her showing me her children's pics on her laptop (and I marveled at someone being able to show pics on a lap top screen far away from their home PC! Boy, how our technology has rushed along. That was back in 2008).

She loved horses and she and Matt had a farm full of them. Sadly, Chiari took away the horses and I could visit and relate with Becky about that. She had a movie star smile! A lovely, loud laugh. I recall her telling me that she used to be a bullrider before her life as a mom. she remains the only lady-bullrider I know.

Becky Harms, I miss you, but a huge part of me is envious of you right now. You no longer have pain. And you are most of all in the Arms of Jesus!! And when you are not holding onto our Lord, you are riding again, perhaps even some bulls along with the horses! I loved you and still do. I look forward to seeing you one day. Please have a good horse saddled up and waiting for me, okay?

Last year, I intended to enter...

2011-04-05T21:53:00.000-07:00

...the following here on my blog, thoughts that came to me on the 6th anniversary of my injury date (April 9, 2004).

I say "my injury," not "my accident." I've never been able to call anything an accident in my life.

I think about it now and realize with wonder, as I look back down the trail I've been on, I never blamed God. I never blamed the horse. I never blamed myself or anyone else.

And today, I realize this is because I lived so many years on the edge, when I could have or should have been hurt or killed in my profession of horse-training and cowboying, that what happened seemed to be what naturally SHOULD HAVE happened.

I never had regrets and I still don't.

If I could go back and trade in the injury with a payment of all those horseback years; give those 40 years of cowboy life in exchange for "no injury," no broken neck...I honestly wouldn't do it.

Those days and stories remembered are treasures to me, gems that I sometimes get out of the safe-deposit box of my memory and I hold them up to various rays of sunlight and allow the facets to fracture into beams that play over my upturned, thankful face...

...and I thank God for them all.

Every last one.

another sweet poem...

2011-04-05T13:06:00.000-07:00

I liked that "I needed the Quiet" poem so much, I did a websearch on the author. And I found this wonderful poem about faith:

Doubt cries, "It is impossible! You can't, you can't go on!"

Faith softly whispers, "Yes, you can. Just trust in God. Be Calm."

Doubt cries, "Look down! Your path is steep and rough with stones and briar!"

Faith gently says, "I'll take your hand. It's beautiful up higher."

Doubt has not one thing to give but "going back" alone;

Faith has God, eternal life, and heirship to a throne!

And so, on unseen eagle's wings, these feet of clay are borne.

While faith within me sings and sings, We rise above the storm!

by Alice Hansche Mortenson

"I Needed the Quiet"

2011-04-05T12:57:00.000-07:00

I needed the quiet so He drew me aside.
Into the shadows where we could confide.
Away from the bustle where all the day long
I hurried and worried when active and strong.

I needed the quiet tho at first I rebelled
But gently, so gently, my cross He upheld
And whispered so sweetly of spiritual things
Tho weakened in body, my spirit took wings
To heights never dreamed of when active all day,
He loved me so greatly, He drew me away.

I needed the quiet, no prison my bed,
But a beautiful valley of blessings instead...
A place to grow richer in Jesus to hide.
I needed the quiet so He drew me aside.

by Alice Hansche Mortenson @1978

What this blog is about...

2011-04-05T09:21:00.000-07:00

Just thought I'd mention here something that some readers may not know and that is that this blog is a "medical blog."

It's just a place for me to post and record my feelings about happenings that relate to my April, 2004 injury (Jefferson Fracture, 4 plc, and "atlanto-occipital dislocation"-- or in laymen's terms, "internal decapitation"). I started this blog 4years ago, when I thought I was going to have surgery to stabilize my head/neck, and I thought I would be in a halo for a few months. I thought, at the time, that it might be of interest to hear the day-to-day struggles of living in a halo. However, that never happened, which is, even in the abscence of the surgery and halo placement, still a part of the story.

The readers here have followed my journey of raised hopes and dashed surgery plans. Once again, it's all still a part of the picture. And something that many, many patients (those with congenital conditions such as Chiari Malformation or cranial-cervical instability, and/or those with traumatic injuries such as I endured) deal with year after year after year. It's now been 7 years since that jumping horse stopped suddenly at the base of a 3'6" jump and launched me over his neck, over the jump poles, where I landed head first and thus suffered the traumatic injuries listed above. April 9 will mark that 7 year anniversary.

Rejection by specialists; difficulties dealing with health insurance and doctors' secretaries ; egotistical neurosurgeons and prima dona specialists; cancelled surgeries; ongoing pain and spinal cord symptoms; presenting our situations to family and then coping with their responses, and oh, so much more, all of these things are shared by so many, including myself.

For some people, they break a major bone, or receive a tragic diagnosis and their insurance stands by their promise of being responsible for treatment and follow up care, they undergo surgeries and treatment and then they recover. They have not had to undergo that difficult search for a specialist who understands the rare condition or injury that was incurred. They've not had to convince family and fellow workers that there IS something wrong, something major.

Thankfully, the sort of journey I've just described is a common occurrence and for that, I am so thankful.

But there are different experiences from that and I think many of my readers here relate to the disappointments, betrayals, grief, bitter rejection, shameful treatment, castigation from specialists and, again, dealing with egos and personalities and trying to "win them over" to your team, praying they will go to bat for you. Far too often, no one goes to bat for these people. They wind up being the driving force for any iota of care or treatment they receive.

After crawling under the porch and licking their wounds, these patients keep picking themselves up, dusting themselves off and moving ahead with the war, even after year upon year of intermittent defeats and lost battles. They are heroes of a sort, unknown soldiers fighting an unseen battle with little to no assistance from anyone else (family, fellow workers, case managers and claims adjusters, surgeons and nurses et al).

As you read my ongoing story, perhaps you can think of others in your acquaintance who are riding down the same trail, and this knowledge will help you to help THEM, and for that, I would be so thankful.

quick update

2011-03-15T11:55:00.001-07:00

I am sorry I have not been able to keep up very well with posting! Life is so full with the every day things that my few hours to get them done seems lacking. Just the laundry and the kitchen and making the bed and keeping up with the few phone calls I make and the emails (I'm way behind on that one!), it all keeps my busy and that's a good thing!

For years, I have evolved into feeling like "living" is my job. Just waking up and doing the routine things I do every day, that is my job each day. And I love it. Do you feel that way too, those of you who are disabled?

Thank you to those who leave comments! I really do love getting those comments.

A few months ago, I gave up being a moderator at Chiari Connection International. I loved doing it and loved the people I was involved with. But I noticed that I was spending about 3 hours a day with CCI and other message board stuff, and then having a hard time finding the energy and time to call my Mom. She is 86 now, and lives 3000 miles away, so I need to focus on those family things for awhile.

We just got back from a quick trip to California to see our son. What a blessing we experienced there! We are now thinking ahead to the Fall and perhaps being able to use Sky Miles and taking our son to Alaska with us this year. There is so much "aviation" up there and that is what his career is, where his knowledge and experience lie, so we know he'd love it up there as much as we do.

While in California, we spent some time with the Elephant Seals that are almost always resting on the beaches near San Simeon. Since we used to live not far from there, we have spent a lot of time with these enamoring animals. They seem to radiate a warm peace that affects everyone who goes to see them. I mentioned to my son that the fresh, brisk breeze and watching the seals seems to bring a sense of euphoria to my brain, and he agreed, it does the same for him!

About my health, it remains the same. I last posted that Kadlec Neuroscience Center in Richland, WA turned me down due to my out-of-state workers' compensation insurance. So, I next asked for authorization to be seen by a neurosurgeon in Seattle, at Swedish Hospital. Dr. O has done surgery on a few patients who had previously been Chiari Institute patients. And the feedback has been very favorable.
My insurance responded quickly with a "yes," and then Dr. O's office has requested a new cervical MRI before they set me up with a consult appointment. The MRI will be March 23. I am anxious to be seen by Dr. O and to hear his feedback.

I am wondering if any of my readers experience the same dilemma that I feel right now. The world seems to be in such chaos! Since I am a born-again Christian and believe the prophecy in His Word, I naturally wonder if all of this turmoil is a precursor to the end of the World...to Jesus' second coming. I know that each generation experiences such worldwide havoc. I sometimes think and wonder how it must have felt to be alive during the Second World War, and seeing war being fought valiantly on two fronts, the Pacific and European theater.

To see the atrocities of concentration camps; the bombing of Hiroshima and Nagasaki; the terror of brutal dictators, must have made many believers at that time wonder themselves if this was "it." The time that all prophecy points to in the Bible.

The Bible tells us that no man will ever know the date of His coming. Not even the angels know. But we will know the seasons, just as surely as we know that Fall has arrived when we see the leaves falling from the trees.

In the shadow of world events, I wonder: do I want to go through with an intense surgery that will demand a rugged recovery?

Perhaps the reader thinks this is simplistic or foolish, but remember, the Bible also tells us that the ways of God ARE foolishness to the world.

It's difficult and challenging, isn't it, to listen to our hearts and instincts and also our knowledge of God and our every day experiences and then make a BIG decision.
Sometimes, the way is not so clear. Please help me pray that the way WILL be made clear in the choice of having surgery or not (If it is offered. I have asked God to help me by having this new neurosurgeon refuse to see me IF it's not God's will that I have the surgery. After all, Kadlec refused me. The doctor at The Chiari Institute refused me. Perhaps I'm missing all the road signs!).

My husband and I are planning to plant a big vegetable garden this year. Maybe "big" is a relative term here, as I'm sure we will not be planting anything BIG, just something larger than we've done to this point on this property. I am guessing that we all are, in large and small ways, wanting to feather our nests, batten down the hatches and hold down the fort!

However, the most important thing we must do is to be sure of our relationship with our Creator. We can have the basement full of foods and lots of money stored under the mattress; we may can and freeze and dehydrate and "put by," but it all can be gone in the blink of an eye. We are told in God's Holy Word to "lay not up our treasures on earth where moth and rust doth corrupt and thieves break in to steal, but instead lay up your treasures in Heaven." (Matthew 6:19-20)

Now is the time to be sure of your salvation, which floats within your reach in the form of everlasting life and forgiveness with Jesus Christ. Just as you must "make hay while the sun shines," you must make this big decision BEFORE you die and face His judgment. Now is the expected day of salvation, His word tells us: "Behold, now is the accepted time; behold, now is the day of salvation" (2 Cor. 6:1-2).

We may wonder what is happening spiritually within the world. We may ask ourselves, is this the time, are these the signs of the end of the world? We may feel a bit confused about it all and wish for more clarity.

But the verse above, from 2nd Corinthians, leaves no room to waver on interpretation. NOW is the day of salvation! If you have not done so, won't you pray with me as you read this?

"Dear Lord Jesus, I come to You today with a broken heart. I know that something is missing in my life. I know that when I try to take over, I mess things up. I know I need help.

I know I have sinned, as all people have sinned. And I know those sins are a wall between You and me. I want a relationship with You. I want to know more about You! I want to feel confident about where I stand with You. I want to know where I will go when I die, when I pass from this brief life into the presence of Almighty God.

So, right now, I give You my life. I give You all of my heart and I ask you to come into my life and heart and to reside with me, as Master and Savior. Please, forgive me of my sins and make me whole and clean.

I don't know much about doctrine or even much what the Bible says, but I do believe with all of my heart that You died on the cross for MY sins. If I'd been the only person in the world, You still would have died on that cross for me alone. So that I could dwell with You for ever, in heaven and on earth.

Please, Jesus, come to me and be my Savior. Save me from the chaos of this world. When I hear the news reports of earthquakes, tsunamis, political turmoil, uprisings, bombings, terrorism, deaths of loved ones and divorces between friends, oh, please God, place in my heart and mind a confidence that those things are only temporary, but I stand "right and sure" before You and here on earth because I have prayed this prayer today.

In Jesus' Name, AMEN."

well...

2011-02-22T21:28:00.000-08:00

...the long and winding road....

As I'd written here before, I felt really good about going to Kadlec Neuroscience Center, only 2.5 hours from me. However, yesterday, I received a call letting me know they will not accept my out-of-state, workers' compensation insurance.

Sigh...

Used to be, I'd go crashing on the bed in the guest room and cry my eyes out, expressing and releasing my crushing disappointment yet again.

It's been almost 7 years now. Maybe I've learned. Maybe I'm jaded.

I was disappointed, but I shrugged it off, and fell back to Plan X, having exhausted over the years Plan A thru W.

I called Dr. Rod Oskouian's office in Seattle and asked if they would take my insurance. They replied that they would.

So, now my primary must re-contact my insurance case manager and ask for a new authorization, this time to Swedish Medical Center in Seattle. Then they must copy reports again and fax or mail them off to Dr. Oskouian's office. From there...hopefully I'll get a consult.

It's a six hour drive to Seattle but it's okay. I really "feel" right about surgery. I haven't felt like this in a couple of years, since I was dumped by my previous neurosurgeon.

I'll keep you posted!

Thanks, Dear Reader!

Timeline

2011-02-05T12:03:00.000-08:00

I am constantly thinking these days of the new neurosurgeon I hope to go see...and soon! I asked my primary to refer me to Kadlec Neuroscience Center in Richland, WA. I have not heard anything about this place, not talked with anyone who has gone there, but I saw their ad, and I just had a feeling that this could be THE place.

In preparation for my first consult there, I thought I should create a timeline for the doctors, showing the high points of my medical history for the last six plus years. I thought I'd post that here.

******************************************************************************

TIMELINE FROM DATE OF INJURY TO PRESENT

April 4, 2004 -- injury incurred while training jumping horse. Fell onto (helmeted) head and, at emergency room, was diagnosed with 4 place fracture of the C1. I was 52.

April 4-12, 2004....hospital stay. No surgery or other treatment. Sent home with semi-rigid collar and told to return for follow up in 30 days. Also told to
remove collar in 8 weeks.

September, 2004... After being told by my neurosurgeon (no surgery had been done) that my C1 had healed "straight and fine" many times, I asked to go back to work (training horses). I was allowed back to work.

After a couple of months, however, I noticed that my symptoms were much worse after riding or working (ranch work). I also noticed I had to stay in bed for several days after a gentle horseback ride, due to the diffuse weakness, pain and nausea.

Winter, 2004... I asked to be put back on temporary partial disability and proceeded to try to work at my own pace.

Since my symptoms continued to worsen in spite of being told my C1 had healed "straight and fine," I began to wonder if I had a congenital problem that the injury had riled up. When I went online, the symptoms associated with Chiari Malformation seemed close to what I was dealing with.

April, 2005... I was seen by the Chiari expert at UCLA in CA. He told me I did not have Chiari, that I was "lucky to be alive. Get off the internet and get on with your life."

My condition continued to worsen. I was not able to do much work at all and entirely unable to enjoy hobbies or life outside of work. I began to visit with the neurosurgeon at a Chiari center in N.Y. online via email.The neurosurgeon felt that I probably had cranio-cervical instability (vis a vis a traction test he had me do at home, approved by my primary treating physician).

January, 2007.... I traveled to NY for a consult. From a fine-cut CT, the surgeon found that I still had a very large break in the C1 (3 years post injury). "You are walking around with a broken neck," he said.

From my list of symptoms, from in-office testing and from new imaging of the lower spine, he diagnosed me with occult tethered cord. He felt the injury caused the OTC to become symptomatic. It was also practice at that facility to cut/release the filum terminale (if suspected to be too tight) before their "extraction" craniocervical fusion.

November, 2007.... I traveled back to NY. I underwent the "Invasive Cervical Traction," where the skull base area is examined via CT while under 45 lbs (in my case) of traction. From this test, I was told by the chief of neurosurgery that when I suffered the Jefferson Fracture in 2004, I also had suffered dislocation of the occipital condyles (the skull broke loose from the spine/C1). I was told my skull had fused itself back but at a wrong angle, slightly down and to the right.

I also was told by this neurosurgeon that I "have A chiari but not Chiari." I understood him to mean that I have low-lying cerebellar tonsils, but not Chiari Malformation. This was confirmed later by the first neurosurgeon I saw there.

The next day, I underwent surgery for the tethered cord. During this surgery, it was found that I had 2 dural ectasias (of significant size and weeping CSF) and a very large mass of arachnoid adhesions.

According to the OR report, these were dissected to reach the filum, and the dural ectasias repaired.

The plan was set for me to return in a month to undergo the CC fusion. However, because I had mild osteoporosis, my neurosurgeon felt I should undergo 12 months of some sort of bone-enhancing" therapy to strengthen the bones before fusion.

Therefore, I underwent 6 months of pamidronate treatment (IV) at The ______ Cancer Center. Even before I had these treatments, my osteoporosis had been downgraded to moderate osteopenia.

After that, I did six months of daily injection of Forteo, again to strengthen my bones. This was prescribed by a hematologist at OHSU, where I had been referred by my local hematologist.

My hematologist finally said that he felt my bones were good enough for a fusion surgery.

June, 2009...I was scheduled for the fusion surgery in NY. However, at the time I went there, this center was experiencing some problems which ended with my surgeon no longer being allowed to perform surgery until the procedure is first approved by a hospital review board. The review board did not approve my fusion surgery. I was told that my C1 had "spontaneously healed" because of all the pamidronate treatments and I was no longer unstable and, therefore, did not need a fusion.

When I came back to WA, I went to visit my hematologist in Portland (OR). I told him what I had been told, that my C1 had "spontaneously healed." He told me that just does not happen. Non-union bones do not suddenly fuse themselves after four years.

November, 2009... I decided to seek another opinion. I went to see a neurosurgeon at a large hospital in Portland. I had many tests done there, and the neurosurgeon told me that the neurosurgical team went over my imaging. He showed me where my C1 is still non-union in 2 or 3 places. He stated they wanted me to have the fusion surgery. I thought about it for some time, but finally concluded to myself that there was something that did not quite "fit" for me and and that surgeon/facility. It might have just been "me." Whatever it was, I decided not to pursue a fusion.

From about February, 2010 until January 2011, I had made up my mind not to pursue a fusion. However, my symptoms have worsened and worsened. I began to feel once again that I would like to find a capable yet friendly neurosurgeon who would not mind giving me all the information I need about a surgery, and hopefully he would offer me a stabilization surgery.

I saw the ad for Kadlec Neuroscience Center in the Oregonian and that is why I have come for a consult today.

oh, this is not good!

2011-02-05T11:32:00.000-08:00

I am in the depths of suffering right now. I filled my prescription yesterday for oxycontin, and this morning when I went to take it, I noticed the pills were different. I took off my glasses and read the label on the bottle: they were oxyCODONE, 15 mg. I didn't take one!

I hate to think what I would have felt like if I had taken my regular 5 mgs of oxycodone PLUS the mistaken 15 mg of oxycodone! (For those who do not know, oxycodone is "immediate release" and oxycontin is oxycodone BUT "extended release."

My usual regimen is 2 oxycontin a day, one in the AM and one at night. Then I take oxycodone throughout the day for breakthrough pain, 5 to 6 per day. This does not take care of the pain completely and some days, I feel awful rough.

But now I can see what good the oxyCONTIN does for me this morning, not having it (at the time of this writing) up to 4 hours late. Oh my! I don't feel withdrawal symptoms so much (such as chills) but I just feel the PAIN that is happening when the oxycontin is covering it up. And oh dear, not good! Now, I understand why people addicted to oxycontin break into pharmacies, quite honestly.

Addiction: this might be a good time to talk about that. No one likes to be addicted. And I do not feel I AM addicted. However, my body IS used to having it. I'm not addicted to the action of getting a glass of water and taking a pill every 3 hours. I do not feel a "high" when I take my meds, so I certainly am not addicted to that! I just am so glad that there are drugs out there that help mask this central pain because this is surely reminding me that I have some severe spinal cord pain happening!

I can't think right now of the word that is used for when your body is used to getting a certain thing (cigarettes, alcohol, coffee, soda, and yes, medication) versus addiction. I have heard over the years and have also read on medical sites that someone who is in pain, real pain, will NOT become addicted to the pain medication. Their bodies are accustomed to having the medication, but the patients themselves are not addicted to that behavior.

I always think that proof of this are the hundreds of people I know and have seen on support groups over the last 5.5 years who are so eager to get off the meds. Everyone I know with central pain wants to be off the meds, and some even go through the process of getting off of them (always having to go back to taking them, however. Short of a miraculous healing, there is nothing natural or herbal that can be done for spinal cord/brain pain. You can't meditate your way out of it).

Well, what has happened this morning is that I called the pharmacy as soon as it opened, speaking with a very kindly pharmacist with an Australian accent (don't we northerners love that accent!). He told me he was not on duty yesterday, but that he would make the switch (take back the oxycodone 15 mgs and give me back the correct oxycontin 15 mg) when I bring it in. I told him, "I live 35 miles away and I do not drive. I can't get there today. Could you have a courier bring it?"

Right now, I'm waiting for the taxi driver to bring the correct meds. Great idea they had, hiring a cab to bring it out here. I've taped the top/cap of the wrong med and put it back into its original pharmacy bag, stapling the top. This was a request from the pharmacist so they know they are getting the full 90 back.

The druggist said, "If it's any consolation, the pharmacist yesterday, his daughter was in labor having his grandchild. But I'm so sorry you've had to go through this!"

I replied: "That's okay. It's simple human error. No bad was intended. I'd hate to have to pay for every mistake I've ever made. I'll probably be just fine as soon as the right med gets here."

He said, "Yes, I will, too!"

Litigation: Of course, your mind goes to "should I call a lawyer and sue this place for this error that is causing me so much pain?" After all, it is a big, national chain of a place.

However, I'm not that kind of person. I can't take credit for it, I just am not wired that way. If I ended up in the hospital and suffering for a long time or whatever, then I'd certainly consider making someone pay the damages for their error. But, if I just suffer for one morning, and all is fine as soon as the meds arrive, I just can't even begin to consider suing anyone.

As I said to the Aussie pharmacist, "I'd hate to have to pay for every mistake I ever made!"

Bottom line: When you open a new bottle of meds, do NOT take them if they look differently. Even if the label says the right med, if the pills look even just a little bit different, don't take one! Call the pharmacy and talk to the druggist. Call your doctor if you need to. You might find that a different company is making the drug you take, and thus the pills are differently colored or shaped. If this is the case, then that is fine.

Another lesson: if this ever happens to you, if you live far from the pharmacy, then ask firmly for them to deliver the meds as soon as possible. I think they will do it, their butt and reputation are on the line. In my case, the pharmacy folks were wonderful.

Sigh...taxi is not here yet. I'm waiting!

Compulsive List Making

2011-01-12T20:31:00.000-08:00

If you think about it, you can create lists and notes and cross-references to infinity, to the nth degree.

I have a compulsion to make lists. But not just lists of things I need to do, I do make those lists but then I re-list the lists in sub-categories, such as: "Things I must do tomorrow," and then I relist the items in the order of priority. I cross reference things into a notebook I use under letters of the alphabet. Insurance, under I, will say, "see The Hartford" or "see Simcoe" (a local insurance company).

I keep all of my lists in my notebook I call my "working memory," and even tho I rewrite my lists, I enjoy going back to several different pages crossing off ONE thing I've accomplished on several pages. It makes me feel like I've achieved more than I have!

And "cross off things done on list" is on my list too!

I've been overwhelmed with paperwork and desk work and computer work for the last two months. I've had to research and select and arrange our auto insurance; our health insurance (we are dropping our Medicare Advantage plan because they stopped offering it in our area and because, with Obama-care, the premium went up over 100%. We are now on just original Medicare with a drug plan); our homeowner's insurance and our re-finance; and many other clerical things.

Clerical type things make my brain burn. I also in that time period wrote an article about our neighbor (with her blessings!) for a magazine, so there was that pressure to do it right and get it done on deadline.

I hate every single thing that has to do with my left brain. My injury was on the left side (I know because I still have the helmet with the divet in the felt showing where I laned on my head) (and I know because the MRIs show the lesions on the left brain).

I LOVE the right brain, the creative side. Mindlessly painting a wall or a door; cooking and baking; drawing; gardening, you get the drift.

Making phone calls; figuring out how something works; learning some new task (like how the new FoodSaver works) is all daunting to me.

And I keep these lists because I have anxiety that I will forget if I don't write it down. And my speech therapist back six years ago told me to make lists because if I didn't write it down, my brain would loop thoughts of it trying to hold onto it in my memory. I could let it go if I wrote it down.

I keep a list in my notebook-working memory. I write a list down on my calendar block saying what I did today. When I ordered something, joined something, sent away for something.

I have various file boxes, more than I can count without looking. I just organized a new expandable file with insurance and mortgage information. It's good to be organized and know where to find things. Oh that reminds me, I have a list of "where things are stored," but I can never remember where THAT LIST is STORED!

Problems with thinking plague me as I muddle my way through. Today, I had to call the auto insurance company. THANKfully, I got a nice man with a clear voice, easy to understand. I started off with my caveat: "I suffered a fall onto my head and have some trouble with thinking and understanding. I may ask you to repeat things and ask you to wait while I take notes on what you just said. I hope you understand."

I laughingly told him an example: I was reading all of this material sent to me by the insurance company, and it kept referring to "the covered vehicle." Each time I read that, I seriously thought it meant the car we keep in the garage, because, since it is in the garage, it is COVERED. A couple of hours later, it dawned on me: Oh, it doesn't mean our car in the garage, it means the car covered by their insurance! Oh yeah!

I always have trouble with nouns, the names of things. I know I have many readers who also have this funny symptom. Today, I was wanting to mention something about an envelope and ended up mentioning an elephant. This can really be entertaining at times!

I know my list making is compulsive because, in June, 2004, I started seeing a physiatrist as my primary-treating-physician for my work-related injury. Dr. R was funny, telling jokes all the time, a lot of fun. I felt the need to give to him each time I saw him (even if it was every two weeks or every month) a list of my symptoms. This list, typed, was always a page and a half long. It got to where I would give the list to him, and he'd say, "You know, there's a name for this, it's a mental illness called OCD, all of this list-making."

That made me feel rejected and judged. But I just told him back, "I don't care if you don't read them. I just don't want you to ever say I didn't tell you about such-and-such symptom someday!" I think that kinda put him back into his place, and he realised he better pay attention.

Ginger and Nausea

2011-01-08T12:33:00.000-08:00

It pays to have friends who remember things about you and read your blog!

My friend read this blog about nausea and the next thing I knew, I had a small package in the mailbox from her, with two tin boxes of ginger drops! Wow!

And you know what? I'd forgotten how well ginger helps. I have a bottle of ginger ale in my refrigerator that I simply forget is for nausea and I have the spice container of powdered ginger for mixing up with water and ice and a bit of sugar. But, one must REMEMBER to use these things!

One of the brands of ginger drops that sent to me is wonderful. Made by "Newman's Own." They are tasty and comforting to take. I have the tin right beside the bed now and even my husband will take one when he feels that his stomach is upset. They truly 100% work!

The other kind is made by Altoid's and they are HOT. Like fire in the mouth. But they do work. I have that tin in our pickup.

Thank you so much, dear friend! For the tins of ginger drops and for remembering that these exist and work so well! God bless you!

2011-01-08T11:37:00.000-08:00

excerpt from a telephone conversation yesterday...

2011-01-08T11:19:00.000-08:00

"I ask you to be patient with me, please. I can't hear very well, and I also have brain damage, so it's hard for me to understand sometimes."

Who wants to tell a perfect stranger that they have brain damage? No one! But I do, and more often than I care to admit. Now, some folks might think that is being "negative" or stating a "self-fulfilling prophecy," but to me, it just "is what it is." And I can't pretend to understand, especially about things that are important to comprehend (no pun intended) like insurance!

The statement above was made yesterday while talking to a woman for United Health Care, which provides insurance for AARP members. I would think she'd be used to talking to the elderly and know that she needed to slow down and repeat herself often.

I only stopped and said that because I could hear the impatience in her voice. When I would ask for an explanation or request that she repeat something she'd said, she was started to "sigh" before answering. We all know how it sounds. And I don't take it anymore. I was just trying to find out if my husband was firmly subscribed in their insurance, since he did not get his welcome letter and I had received mine.

As it eventually turned out, I had a good reason to call them and find out! After I asked her to be patient, she softened somewhat and told me that they were getting lots of people calling because the new membership cards had not been included in the welcome letters as they should have been.

I just thought I'd write about this for the sake of others reading here who have problems with thinking. If you haven't already, then tell yourself it's okay to tell someone on the phone that you have troubles with thinking and you need them to talk slower and to explain things. Even practice it out loud a time or two. I learned that from my speech therapist who I saw for six months after my injury. She called it "rehearsal."

Also, if you can, determine to be self-depricating. These people on phones have a rough job, dealing with folks all day. I wouldn't want to do it. So, if you don't take yourself too seriously, that usually creates a "vibe" with the person on the other end of the phone to where they will move mountains for you.

What I mean is if you ask for a repeat often of the same question or fact stated, you might start the next request with, "Oh, my silly brain! I'm sorry to have to ask you again. It seems like I can't add 2 plus 2 today!"

This way, the person on the other end isn't feeling defensive and thinking you are blaming her/him.

There's an old adage about this sort of negotiation-personality. I can't recall it exactly right now (silly brain!) but it's something like, "You can catch more flies with honey than pig...er...ah....doo-doo!" I guess the honey is sticky and therefore catches the flies better. 'Cause I sure do know that pig doo-doo attracts plenty of flies!

I hate calling on the phone for anything these days. Perhaps this is one of the reasons why. Not only is it difficult to understand someone when you can't SEE them talking, but who wants to have to put on a happy face and admit you have brain damage??? But, we all have to do our daily business when necessary on a phone, so this is the way I have found to navigate through it all.

great pic of my old friend

2011-01-07T13:54:00.001-08:00

I don't post any pictures of our other dog, Quincy, because he looks as bad as I do in pictures! But the other day, I looked up and saw him lying on top of the back cushion of the leather loveseat, and with the red pillow below him and the chile--colored door behind him, I was taken with the beauty of it all. I grabbed the camera, told him to STAY, and surprise! he did! And the result is the picture of my old buddy, Quincy.

My Christmas message...a winter story

2010-12-18T09:26:00.000-08:00

I remember times like this.

Back in 1979, we were living on a ranch in New Mexico, way up on the Continental Divide.
We were snowed-in that winter. The snowplow stopped 9 miles from our ranch, and our nearest neighbors lived 2 miles beyond that. This meant we had to ride out horseback to our neighbor's house.

We were 25 miles from town, so we couldn't get to the PO to get our mail. Our neighbors would get our mail for us, and every Wednesday, it was pre-planned that we'd ride the 11 miles out and pick up our mail from them.

Some weeks, we could not go because there was a snowstorm on that day. Those weeks were hard, because that meant we had to wait a whole week more to get our mail! ANd our mail was so precious to us! This was before computers and email.

My father, 3000 miles away in NH, would record messages to us on cassette tapes. How we loved getting those tapes! I still have them, and gladly so because today marks the date, 14 years ago, when he died. However, I have never gone back and listened to the tapes I have because it hurt too much to hear his voice. But I still feel glad to have the tapes and save them for my Dad's grandson, Jesse.

Anyway...

when we got to our neighbors' house, the husband, Johnny, an old Polish rancher who'd lived on that ranch every day of his life, helped us put our horses into his barn and we'd loosen the cinches and give them some hay, then we'd trudge across the barnyard to their house.

I'd be carrying the egg cartons containing the eggs I had gleaned from our hens on the ranch. Our neighbors would take these 3 or 4 cartons of eggs to the feed store in Gallup, who would then sell them for us. That was the ONLY amount of money we made during the winter, those few precious dollars from the sale of the eggs I had packed across the back of my saddle's cantle where they'd ridden snug and safe against my lower back, even when my horse had to lunge through snow drifts or had fallen through ice into swiftly running creeks.

In Johnny's house, we'd take off our boots and warm up our toes in their warm kitchen, while Ann, Johnny's wife, warmed up a lunch that often had delicious Polish sausages made from their own ranch beef.

How precious those visits were! We'd hear the news of the outside world and gossip about other neighbors and also hear old stories from Johnny and Ann. They were good folks, and good to us.

Too soon, it was time to bundle back up, take our sack of mail (letters and the Readers Digests that someone had purchased a subscription for us) and put them into our saddle bags, tighten the cinches, snug up our scarves and hug-goodbyes to Johnny and Ann, riding off down the county road until we got to where the snowplow had stopped plowing, then we'd point our horses toward the snowbanks, they'd clamber over and then seek out their own tracks that had been laid down in the snow that morning. Nine miles of hard riding lay between our horses and their warm barn; between us and our cosy cabin; between
our cold fingers on the reins, knitted caps pulled down over ears, and the joy of pouring out the saddlebags onto the big table in the cabin and feasting on news from our families.
This time of year, there'd be Christmas cards, and we'd read over and over the handwritten notes inside. My mother would send news of her family; my sister in Hawaii wrote long letters of her beginning of pregnancy and the dreams that such a blessed event promised (an experience that I would soon learn was also my own!); the Readers Digest held photos of seductive foods displayed for the camera in ways that would lure the reader to purchase Borden's Eagle Brand Condensed Milk and Land O' Lakes butter.

Could the photographers have known that a man and a woman surviving the long winter atop the Continental Divide in NM were drooling over their sumptuous presentations? Were they in New York City or Los Angeles with their cameras and lights while we were packing precious eggs over the miles and through the worst winter that mountainous area had seen in 50 years? I still can see in my recollection's eye the strawberry shortcakes that graced the small pages of the magazine not unlike the Sirens perched on rocks who would send out their song to call in unwary ships to meet their battered end upon the storm-ravaged shore.

While we were eating eating eggs which grew more scarce as the winter continued that year and drinking the milk that I gleaned from the wild Angus range cow, fighting off her hungry calf for just a cup of her precious nectar; while we had only pinto beans, eggs and milk and precious little else We had no flour or condiments, only eggs, milk, butter from a jar of cream --and cream from an Angus cow is little to nothing!-- and pintos. There are only so many ways to cook these ingredients and over the 5 months we were snowed-in, I believe we discovered them all!

We learned again that winter that blessings abound and are easily found in the little nooks and crannies of life.

A card lovingly mailed from far away; a note scribbled in haste before the stamp is licked and applied to the envelope; an extra half-cup of warm milk from the recalcitrant cow who would only allow me to touch her bag while her nose was buried in oats in a pan on the floor; the extra egg from the hens who faced bravely the cold and the tufts of snow that blew in through the cracks in the coop; the lovely, sunny day that allowed us to saddle horses and head out for a long-awaited visit over hot, strong coffee and the laughter that accompanied our visit with old-time ranch folks; yes, even the photo of strawberries and whipped cream and shortcake, that did not fill the belly but did produce the taste within our mouths.

Blessings abound. If all we have is a room, we can look around and know that blessings abound.

It's not hard for me to liken our treks through the drifts toward the shelter of our friends' home at the end of our trail to another trek near Bethlehem so long ago. I, like Mary, was expecting our first child, a son. Our destination was unknown, in that we could have arrived at Johnny's ranch gate only to find them gone to town, in which case, we'd turn our horses around and head back, empty-saddlebagged and disappointed, toward our ranch home.

I can also compare our winter adventures to the lives of us all. We struggle through rough times, find some shelter, shade or warmth once in a while along the trail, but in the end, there is the reward at the end and all troubles are solved, when we accept the offer given by our neighbors (or, as pertains to lifes' struggles, when we accept the hand of the Lord which is extended to every single one of us today). An extended Hand does no good if we do not do our part and accept it. If we'd not accepted the neighborliness of Johnny and Ann, we would have stayed, along with our horses, out in the cold snow, no warm meal and none of the last week's mail!

Merry Christmas to all.

My prayer is that all who read this will accept the extended Hand of Jesus who offers to
give to us the best gift of all: eternal forgiveness and everlasting Love! He has the best shelter of all from the
storm of Life's travails.

With love,

Who's smarter?

2010-12-14T13:33:00.000-08:00

I have a small dog...well, he was supposed to be a small dog, but he's actually more of a medium-sized dog. Or, maybe he's a small dog with a big-dog personality...or perhaps he's a misfit entirely!

Anyway, Mickey is a 3 year old, standard-sized Dachshund. He's as handsome as he can be. He has so much life in that buff body of his, he can be hard to take sometimes. When he wants your attention, you listen! He's the main attaction in any room he's in! (thank you, he'll be here all week!).

I've told his story here before, how Mickey was left tied up in an orchard by some "pickers" when they had to move on. He has a scar all the way around his neck, an intermittent line of white hair against a black coat, to show how long he pulled at the rope he was tied to before some kind person saved him and he ended up in a foster home. My husband and I adopted him because we wanted a Dachshund. Not sure why. Now, I want an older, calm Australian Shepherd. But, that's another story...

I tried to give this dog away AND give him back to his foster home several times in the year after he came to live with us. He must have been meant to live with us. And I knew that IF Mickey were to live with us, I needed to learn how to teach some manners to a rambunctious dog.

And I did! I watched The Dog Whisperer on the Nat-Geo channel and applied Cesar Milan's techniques to my work with Mickey. And I am amazed at how much I can communicate with this energetic dog because of these tools Cesar teaches.

Okay...that's the background.

Over the last two years, I have diligently worked to teach Mickey to sit and WAIT when I open the door to let him and his friend, Quincy, out. Quincy is a dog we got from the rescue place in California six years ago, and despite the fact he'll bite you if you go to pick him up (and by "you" I mean "me!"), he's pretty nigh perfect.

When I say WAIT to Mickey, he is supposed to back off, sit down, and wait until the old Quincy goes first sedately out the door. And this he does, quite admirably. He doesn't do it automatically, but he'll do it all if I say WAIT.

I suspect it's all a game for him anyway.

Now, when my husband goes out the door and doesn't want Mickey to go out with him, I hear all kinds of fussing and fuming and Pete yelling out: "STAY!" "STAY!" "STAY" "I TOLD YOU TO STAY!"

I told Pete, "Don't say STAY! Say WAIT!

You see, it all makes perfect sense in my head. I didn't train Mickey to sit and back off from the door by saying STAY because STAY implies I am asking him to sit and stay there a certain period of time. Mickey is very smart, and I don't want to confuse him.

If I say WAIT, it means he is to wait a moment or two. Then he can go ahead and roar out the door. If I tell him to STAY, I use that at different times, when I actually want him to stay or stay back. Mickey's smart and he knows the difference.

I've told Pete over and over not to yell STAY at Mickey when he is going out the door, but to say, firmly, WAIT. I tell Pete over and over how the dog is trained. It does no good. Pete keeps yelling STAY at Mickey.

Finally, it hit me, yesterday. Since there is no "The Husband Whisperer" on Nat-Geo or any other channel, I just do not have the skills to teach Pete the difference in Stay and Wait.

So, I need to change how I train Mickey. I need to teach him that STAY means WAIT when he is wanting to go outside, but STAY also means STAY when I use it at other times and want him to sit and stay a longer period.

It's confusing, but I think Mickey is smart enough to get it.

At least until Nat-Geo comes out with a new show...

Nausea, a gift from the brainstem...and thoughts on Medicare

2010-12-14T13:09:00.000-08:00

I wrote down a note to mention nausea that comes from the brain here. I have this almost every day or evening (usually it comes at bedtime, but can sometimes come earlier). And last night, it came to my attention that this nausea feels different from nausea that is a result of an upset stomach.

There is no upset stomach. There is no reason to take a TUMS or whatever because the stomach is simply not involved.

Due to brainstem compression, this type of nausea attacks many of my online friends who have Chiari Malformation. It's all in the brain. Do you know what I mean? Do you have this as well?

Now, there are times I do feel like throwing up and if I could throw up, I think I'd feel better.
But, I never "can" throw up (sorry). But the nausea comes with that type of thought.

Ginger in a glass with some sugar helps a lot. Or a few sips of ginger ale. I kind of like the glass of ice water, with cubes and a tablespoon of ginger in it, along with some Equal or sugar, it's not too bad.

And lying down and keeping really still.

This type of "brain" nausea is common with people who suffer from dizziness or movement disorders. Chiari is a condition of the cerebellum. In my case, the "chiari" (small "c") is a result of my injury. I've been shown by the neurologist at TCI in New York that the herniation of the cerebellum is pressing against the posterior of my brainstem. And the cerebellum, "they" believe, controls movements. Somehow it all comes full circle and the nausea results. I don't feel like I easily get dizzy, however ever since my injury six years ago (my, how time flies), I must be careful to move my head slowly in grocery stores and not allow my gaze to go back and forth looking for things on crowded shelves...that's a sure producer of nausea and dizziness. I know others who have Chiari Malformation experience this same thing.

Right now, I'm trying to figure out my health insurance. I did have a Medicare Advantage Plan (I have Medicare because I am disabled) and was happy enough with that. But this year, due to the new Health Care Law, a Medicare Advantage Plan is no longer available to us.

I spent some time this morning on the phone with a woman from Medicare as she tried to explain some of this to me, and she stated, "The problem is, a lot of doctors are now no longer taking Medicare. There are no health insurance companies offering Medicare Advantage plans in the NW, in Oregon and WA, any more. And that is true of several states."

This is such a sad state of affairs. The people who needed the help, the disabled and the seniors, who were willing and able to pay a reasonable premium, now do not even have that option. Now, our fees will be greatly increased as our only options become a combination of Medicare Part D (drug plan) and a MediGap/supplemental insurance plan. My own costs will go UP from $120 to $229 a month.

And, I might add, right when my Social Security benefit took a nose-dive with a $400 a month decrease.

We're okay...we can keep plugging along. But I truly feel badly for those people who are living more on the edge than we are. I expect their only options will be to go with just Medicare Part A and suffer the high costs of clinic visits and diagnostic testing, IF they can find a doctor who will take only Medicare.

Medicare has a website, www. medicare.gov, and we are told encouragingly to go to that site where they have an interactive program that will give you the names of doctors in your area if you provide your zip code. I did this. I selected to be shown the name of doctors taking Medicare only...and Medicare plus a MediGap plan.

Guess what? No matter what I put into the box, the results came up...

ZERO!

Zero doctors in my area, or within 25 miles of my area, who will accept new patients who are covered by Medicare along, or a MediGap plan. I have a family practice doctor now, but what about when he retires or if he moves? What about people moving into this community?

Only an echo serves as reply.

Happy Thanksgiving, one and all!

2010-11-25T12:16:00.000-08:00

What blue sky after the storm!

2010-11-24T21:15:00.000-08:00

The deep snow brought the young deer into our yard yesterday!

2010-11-24T21:11:00.000-08:00

2010-11-18T15:27:00.000-08:00

An incredible day outside. We've had a lot of rain, some snow, mucho clouds and occasional wind. But today.... ah!! Cool, but very sunny and azure skies.

I know it's cool because when I've opened the door to let the dogs out, the unexpected chill has hit my face. I look at the outside thermometer and it reads 40 degrees at the warmest part of the day. But...the blue skies and golden sun is definitely alluring.

However, I couldn't go out today. Too weak. And too much pain in spite of the oxycodone I keep popping.

I guess I raised too much heck yesterday and today, have to pay the price. I dared to ride my little Wrangler scooter over 100 ft. of bumpy yard to reach the smooth, paved driveway of my next door neighbor, Esther. And I dared to sit there for 3.5 hours with my neck brace off, talking wildly and with great abandon (insert a bit of sarcasm here) with my 87 year old, dear friend.

I normally would not stay so long, I know an hour is my limit, but I agreed to do a story on Esther. I recently succumbed to a request that has been repeated often over the last five years, and finally, I agreed to do it. Not because I was made to feel guilty or bound by some duty to do it. But because writing it would be a wonderful way to bless the requester (the editor of the magazine) AND the subject of the tale.

I haven't written a story for publication for several years, probably those same five years that I mentioned before.

What a time we had, Esther and I! Our visit and my purpose allowed me to gracefully ask nosy questions in order to fill in all the gaps of this dear lady's life. At least, the gaps in MY knowledge of her life. Esther is simply incredible, a survivor and Western pioneer who deserves an entire book devoted to her story.

I know that talking for very long is going to cause my skull base to hurt. But sometimes, it's hard not to talk when the reward is a beguiling tale of livestock, long winters, trailing herds and even going out with the "wagon." (ie the chuckwagon used in trail drives way back when)

I know that riding the Wrangler over even the most gentle of dirt trail is going to also aggravate the skull base area, particularly behind my left ear. And not only is the pain amped up, but the aggravation of spinal cord and nerves makes me incredibly weak. I went back to bed after getting up for an hour this morning and slept til 11:30 am. Then I crawled out of bed and have not gone back to bed for the rest of the day. At least, not yet.

I know when I can't go out and enjoy the fallen leaves, the crisp, Fall air, the birds on wing, the sounds of neighbors' dogs barking, the whisper of a breeze in the Ponderosa treetops. My body restricts me as strongly and firmly as a barred door.

It must sound like the proverbial broken record when I write that I need to pursue surgery. The loyal reader must think: "What is stopping you? Why haven't you done that yet?"

But, setting up an appointment is just more cognitive work that comes so hard for me. I've finished the letter to the surgeon. It is basically a cut-and-dried listing of the injury and doctors I've seen and diagnoses I've been given. A cold timeline. So much "flesh and blood" is missing from the sterile words. However, this surgeon seems to be a caring sort. He writes of his devotion to his patients and his commitment to help them and to spend all the time necessary with them. A rare breed to me! I had one neurosurgeon like that...once. But he gave up on me and that is a whole, "in the past" story. A whole 'nother story.

I need to copy the CDs I have of the imaging I had done in 2009. And just that process looms large for my brain. You all know how that is, how you put things off that seem too big to complete sometimes. And after copying the CDs, I need to check them to be sure they copied correctly. I've finished the cover letter to the surgeon, so for that, I am grateful. I want to write a list of my symptoms, and a list of things I've been told I have. Like arachnoiditis and osteopenia and tethered cord and such.

Now that I've written here, perhaps I'll make a stab at copying a CD. Or at least, FINDING them and then laying them out on the desk above the computer. Or...maybe not.

Did I finish the interview with Esther yesterday? No, I did not. This is to be a small article and definitely does not warrant a full-day interview, but when dealing with a precious friend who is 87, I find it a pleasant experience to watch her reach back into the recesses of her memory and drag out recollections long unaccessed. I smiled as she lifted wrinkled, bony, hard-working fingers to count back years as I asked her questions. I marveled silently about her ability to bring forth hazy images of relatives, fleshing them out with phrases she'd possessed for 80 years.

Things like that deserve respect and take time. It takes the time it takes, like working with a wild colt or grafting an orphan calf onto a new mama cow. You don't rush in a situation like that.

You listen.

So, I'll go back on Saturday and most likely spend another 3 or 4 hours in remembered reverie.

Even if it does cause me to stay abed a day or two.

Some things are worth the price.

First snow, 2010!

2010-11-09T18:01:00.000-08:00

From the window in my office today. The picture doesn't show the snow coming down. They were great big fat fluffy flakes coming straight down and added up to about 3"...but it will all melt tomorrow when the sun is expected to come back out.

A cozy picture

2010-11-02T19:26:00.000-07:00

Here's a cute picture of our little dog, Quincy. He's been with us six years, and is about 9 years old. He's a very good natured, calm little dog (unlike our other dog who is a torpedo with hide!).

A potential candidate...

2010-11-02T19:07:00.000-07:00

A few weeks ago, a young man contacted me through this blog. He had suffered a 4 place Jefferson Fracture last summer, and he lives in the same state I do.

He suggested his neurosurgeon, the one whose care for this man started when he was brought into ER. The young man was put into a halo brace for several weeks, and thankfully, right now, several of his fracture sites have healed (are "union," as they say).

I'm so happy for him, that this fine doctor knew enough to place him into a halo right away and due to that wise decision, his fracture/C1 seems to be healing well.

I looked up this neurosurgeon (it would take me 5 or 6 hours to get to this hospital) and I really like his bio material. If I decide to go see him, I will post here more information about him.

This neurosurgeon wrote that his special interest is in how bisphosphonates affect union of bone after surgery. I might be a candidate he'd take interest in since I've had several years of oral bisphosphonates (Actonel); 18 months of IV infusion of pamidronate; six months of daily injections of Forteo, another bisphosphonate, all prescribed due to my osteopenia and in preparation for the craniocervical fusion I never had (back in NY in 2009).

I need to get my material together, my imaging and radiologists' reports and also a list of symptoms, after I first call his office to see if he would look through my material before making an appointment for me. I just am having a hard time getting this done. For a few weeks now, I've been especially weak and in pain. I do keep up the house with keeping things straight, doing dishes, making beds, doing laundry, sweeping, light vacuuming, dusting. That seems most days all I have strength for.

Most days, I am in bed for two hours in the afternoon, due to my head feeling heavy and me feeling unable to hold it up. Faithful, longtime readers of this blog are familiar with this same ol' song and dance. Sorry.

my new wheels!

2010-11-02T18:45:00.001-07:00

Hi dear readers!

Here is a picture of my new scooter, or The Blue Mule, as I affectionately call it.
We took it, and my husband's little off-road "Hawg Ty" to a spot by a lake up in the mountains, and then we drove around the lake a bit and exploring campsites and such.

The second I took off after taking this picture, I was on a lovely, pine-needle-strewn backroad. It was a place I'd have loved to ride along on my horse. And I was in so much bliss to be out and about again!

In the picture, you can see my Aspen (rigid) neck brace on the seat. I definitely have to wear that while driving the Mule. And even at that, it doesn't seem to give my unstable neck much support. I have to go slow, and not be "out" too long. But it was fun while it lasted!

In the back of our pickup you can see the wonderful hoist that I also got to load the scooter. That is so much neater than I had imagined! Just which way it needs to go, up and down and left or right, into the bed of the truck or out, it's all in the computer for the hoist and it literally takes only a minute to unload the scooter.

I think I've mentioned before, but there is one thing: getting a scooter. And there's another thing: feeling well enough, strong enough to go out in it. I see so many people out with their own scooters, and I have to wonder about their level of disability or energy or something. I just don't feel UP to doing much with the scooter.

We have gone to two car shows since I got it, and both times, I took the Blue Mule and it worked really well and allowed me to have a nice time. My husband likes it better, too, because he says I'm not complaining all the time about how much my feet and legs hurt. ;-)

Earlier in the Fall, I used it a little bit in the yard, when I felt up to digging up some irises that were no longer performing, splitting up the tubers and then replanting them elsewhere. The Mule worked good for that. I haven't felt well enough, however, to do anything outside in several weeks now.

This scooter is built by Pride Mobility and is a Wrangler, in case you are curious.

Alaska: The Great Bear's Cub

2010-10-04T15:08:00.000-07:00

This is a picture I took last May when we took a trip up to the MatSu valley in Alaska. This is an old mine (The Independence Mine) on a back road near Wasilla)

I recently picked up an old book in town, called Alaska: The Great Bear's Cub, by Mary Lee Davis. I didn't know what to expect, but I love Alaska, and knew I'd enjoy reading more about this majestic state, and knew I'd like to have the old book, dated 1930, in my collection.

I have read a couple of chapters so far, difficult to do since the pages are loose and easily fall out. But what a wonderful read! Here's a couple of quotes I like:

It's young hearts for adventure, and the hard work that always waits on true adventure but which is afterward forgotten. Of course, I was rather young myself when I first went to Alaska. Yet even now I can say truly (and this is in the nature of a confession!) I've seldom seen a real grown-up, even in my own mirror...

...Only those who have far-sighted eyes, only those with forward-looking faces, only those whose feet itch for the touch of trails unblazed and soil unbroken, will glory in The North...

...If you know bears, then you will understand the mettle of Alaska. Alaska is an unlicked bear cub, young and half-grown and wild yet, though in first cubhood the Russians put an iron ring in his nose and made him dance to a rough music.

At the end of one chapter, Davis quotes a verse from Robert Service's "Spell of the Yukon:"

Walk lightly,

Hands upon your eyes;

For he who looks on wild earth once

Looks until he dies.

Another book I recommend for readers who are hungry for words of the West in a novel that is hard to put down is called "The Last Cowgirl" by Jana Richman. This one reeks of the West, the good and pleasant odors and the stenches that we like to deny exist. The title doesn't do justice to the book, for I was afraid it would be a book about a drugstore cowgirl in short skirts, short boots, tops that have been worked over with a BeDazzler and make-up that wouldn't last past the first drop of sweat that inevitably cascades down from the brow beneath that Ralph Lauren hat.

Happily, I was wrong. The writing in this book touches the soul someplace deep and sometimes dark. I know if you like good, well-crafted writing, you will like this book. Look it up on Amazon and check out the used book prices. It'll be worth it. One caveat: there are a few obscene words in the book, not enough to detract from the story, but if that sort of thing bothers you, don't pick this one up.

a picture I like...

2010-09-30T22:19:00.000-07:00

Here's a picture of me that I like.

And like many people, finding a picture of myself that I like is danged hard.

This one was taken by my husband where we last went camping. We were out in a field walking the dogs, in the rain, and I was wearing his bulky but comfy and secure flannel shirt. For me, I see myself out in the woods, in the mountains, a high mountain meadow, with my animals, and I feel like "me." It's been a long time since I've felt that way.

Life is just too hard...

2010-09-27T19:48:00.001-07:00

I hate to complain here, but truthfully, life is becoming too difficult for me. Just little things are a burden to do...returning emails, calling my mother, grinding the dogs' toenails, watering the tomatoes outside...mailing a letter or card.

Anything extra seems so onerous and I think it's because just keeping up with the daily duties of household life take up all the energy and time that I have. I'm getting to where I often have to empty the dishwasher (and fill it) in parts and pieces...empty the top drawer and then close it all up and come back later and do the bottom drawer.

Typing has become harder, my fingers and my brain are not talking to each other as well as they could. And typing things you don't mean, and going back to correct them, just a little thing like that tires me out no end.

I've been doing some reading of medical articles on my C1 fracture etc, and seeing how weakness is a big part of the broad spectrum of symptoms that accompany spinal cord injury/brainstem injury. I am sure I've read that before, but I read it like its new, and I think, "All those years of trying to get doctors to understand that my weakness is not because I am out of shape; it's not because I need to get back to exercising and build up strength. I used to try so hard to convey to them the type of person I am and that I will "do" just as far (and even further) as my body will allow me to do, each and every day."

Maybe those doctors knew all along that profound weakness is part of SCI, but they would not tell me, and they'd let me try to plead my case that I'm not malingering, I'm not lazy, I'm not so much out of shape as I am profoundly weak.

I know I need to have the surgery. But I am at such a loss to make it all happen. I thought there was a skull base specialist in Seattle, but I looked more closely at his bio online, and he is a plastic surgeon. I did not trust the doctor who offered me surgery in Portland and I can't put my finger on why. It's so hard when you have something rare and you don't know where to turn. But I'm getting worse and worse.

I've learned that you can have a shiny, new mobility scooter and want badly to ride/use it, but you have to feel well enough to do that first. Whatever is hammering away at my brain and body usurps my strength and pours on the pain, like coal being shoveled to a steam engine.
Pour it on! Chug, chug, chug. This painful weakness rules every single day of my life, and the only thing that keeps me going is knowing that from time to time, I will have a few minutes where I'll feel good enough to empty half of the dishwasher...or call my mom.

Flowers from my August flower garden

2010-09-21T23:40:00.001-07:00

Our campsite at Lower Creek Falls

2010-09-21T23:34:00.001-07:00

My husband and our restored vintage trailer on its first outing!

The photo below is of Lower Falls on the Lewis River in WA state. The picture doesn't have much reference for size, but the falls are about 50 ft. high.

Fall is here!

2010-09-21T23:06:00.000-07:00

Tomorrow night, Autumn arrives! What a wonderful year it has been. The weather has been just the way we like it, mostly cool-ish!

Since I last wrote, we took our trailer on another little camping trip and had another great time. It rained all of the first day as we enjoyed a great campsite in the empty "Mt. Adams Horse Camp." We were all alone there. What a great setup this is for horseback riders. High-lines to tie your horses safely, without damage to trees, are set up at each of the campsites. What a great place that I would have enjoyed with my horses "back in the day."

We are planning to go back there in a couple of days. This time, we hope for blue sky and fair weather so that we can see the mountain looming over the campground, a view that was hidden by low-lying clouds when we were there 3 weeks ago.

This time, we'll take our "recreational vehicles." I finally have my scooter, which I call my "buggy." It is a Wrangler, by Pride Mobility. And it is perfect for country livin'. I have not tried it out much because I just have not felt very good. Lots of the usual pain and incredible weakness, just doesn't allow me to feel foxy enough to go out and play.

My husband bought last weekend a "Hawg Ty." Now, I don't expect my readers to know what that is, as we surely didn't know. But it's a squatty, fat-tired tundra motorcycle. It's light enough to go on the rack on the back of the trailer (my buggy fills up the entire truck bed. I forgot to mention that I also got, thanks to work comp, a hoist that is all programmed exactly to move the right way and amount of forward and back and side to side to gracefully and quickly put my big buggy into the pickup bed, or take it out). The Hawg Ty has a small stationery gas engine, something like a little Honda power plant, it is 5.5 hp. It has a pull rope start, like a lawn mower.

My husband has felt like a big kid with this new bike. He used to race bikes, including flat tracking, and also has been a motorcycle lover all of his life. He also has a "V-Max" motorcycle that is a fast hunk of iron! The Hawg Ty is so cute and my husband drives it around and around our house, looking like he has a little track already, and he always is wearing a big, ol' smile.

So, we'll take the Hawg Ty and the buggy, which has all-terrain tires, to the campground and maybe we can drive around the dirt roads that flank the open meadow there a bit. My scooter is electric/battery and so whisper quiet.

On last Saturday, we took it into town to see the car show, and it was so easy to unload and then drive a bit. Due to having the scooter, I didn't have to walk the 4 blocks to see the antique cars, so that is really a God-send!

Oh, other news is that I'm losing weight. Such a blessing!

I hate to admit it, but the last time I was weighed at the cancer center, I weighed 192.6. I've been inching my way up gradually over the last few years and attributing it all to not being able to exercise. I felt like I really couldn't lose weight, and that I was just doomed to being "obese" (as the doctors so rudely put in their reports!).

I've never really been overweight in my life because of my career in training horses. But I had accepted my weight and the fact that I kept having a harder and harder time finding clothes in my closet that would fit!

Suddenly, one day, I felt inspired to go on a diet. It was like I was given the diet to do, from God. And the will to do it. Because I know first hand that my will power is not worth a hill of beans! But God gave me the direction and the staying power, and I knew it. As I stuck to the "plan" for one, then two, then three whole days, each day I thanked God for it, and asked Him to keep me going.

So, what the "plan" is is simple. I write down everything I eat and the calories that food item runs. And I keep to 1000 (or a little more or less, but never over 1200) calories a day.

I had read somewhere that it takes 2500 cal. for someone to simply maintain their weight. So, I figured that even without exercise, I should be able to lose some. I'd be happy with any weight loss.

And my goal is to lose a significant amount by Oct. 1 when I next go to the cancer ctr for my pain mgmt. appointment, where they always weigh me.

Well, I didn't weigh myself until I had been on the "plan" for two weeks. I didn't want to be discouraged if I wasn't losing. When I did weigh myself, I was shocked to see that I was down ten pounds in just two weeks! I was at 182! I had already met my goal, because in my mind, a significant weight loss would have been ten pounds. What a blessing!

So, I weighed myself the other day in the thrift shop where there was a nice set of scales for sale. And I was shocked to see I was down to 170 already! I'd lost 22 lbs in three and a half weeks, without being able to exercise!! Thank You Jesus!!

What fun it has been to be able to wear my clothes and they are loose and comfortable. And shirts that I wasn't wearing because they were too snug now fit easily. This has been such a big thing, a big blessing in my life, as I'm sure it is to anyone who loses weight.

My goal is to get down to my "riding weight"... the weight I was when I got hurt back on April 9, 2004. I was 148 lbs then, and that was a good weight for me. I never thought I was thin back then, but when I looked at old pics of me then, I WAS thin and didn't know it.

So, I have 22 more lbs to go and I know, with the help of Jesus, I can do it.

I have not been feeling well, as I said. Lots of neuropathic pain, and pain in my head and upper neck, shoulders and upper arms, legs and feet. Same ol', same ol'.

But I can tell that it is easier for my body to carry me around with less weight to deal with. I can now step up onto the cottage-stone wall/flower bed in our back yard, and when I do it, I can literally feel I am lighter to get up there. Nice to have this reward of a job well done when there is so little I can do.

Each day that I can, I have been digging up irises that were planted by the previous owner of this place up on a hill behind our house. Which would be nice, but it's too hard for me to keep that area watered or to go up there to tend any landscaping. So, it's my plan to work when I can, and only for as long as I can, and move any plantings up there down to the flower bed in the back yard or ones in the front yard close to the house. I feel this makes a lot of sense: it's so much easier for me to tend these plants, and they are more visible and more likely to be enjoyed when they will be closer to the house. It's very rewarding, but I just work 30 minutes at it, and the sweat pours off my forehead and my arms become amazingly weak and I get to feeling like I have a wicked flu, all over my body. I should be used to it, it's been six years...

One of my readers, Lisa, lost her good horse Fancy the other day to colic. Lisa, I'm so sorry about your loss. I wish I could have come down and watched you ride her. I know your heart aches with emptiness and I pray God will get you through, as I know He will.

I will post a few pictures here now. And hope to have some nice pictures in a few days when we get back from camping with our "Casbah" (the model of our 1969 Alladin trailer).

Thanks, dear readers! And thanks to all who have posted comments here...your comments keep me going!

Mt. St. Helens, the south face

2010-08-25T17:56:00.000-07:00

A couple of weeks ago, we took our restored camp trailer for its maiden cruise, camping for 3 nights up in the mountains not far from our home. We took a little day-drive up to the south face of Mt. St. Helens and it was magnificent. This lower photos shows a 30 year old forest, since it was 30 years ago that the volcano erupted. All of the forestation was blown down and covered in rocks and mud where you now see pine and fir trees growing.

The middle and top pictures show a "lahar," the river of mud, rocks and trees that happens when volcanoes erupt.

Not many people visit the south side of the mountain, which has a primitive road to access the area. Even on a nice, August weekend, we were virtually alone up there.

Berry Pickin' time in the foothills

2010-07-28T18:23:00.000-07:00

We are blessed to have a prolific raspberry patch about ten feet from our back door. Mixed in with the raspberries are quite a few "thornless" blackberries. I had thought these to be the same wild blackberries that are a noxious (though edible and delightful) weed in this area, but a friend who was visiting a week or so ago pointed out that mine do not have thorns, and therefore are not identical to their wild and reckless cousins which reach out to scratch across arms and wrists and knuckles with great abandon.

In the front yard, I have a line of "black raspberries" which resemble little thimbles to me when they twist easily from their core and are best when eaten in a bowl of cold milk and cereal. I like these tiny, tasty treasures better than the red raspberries (for cereal) and I think it is the sweet flavor of the cereal juxtaposed against the tartness of the little, black berries.

The berry patch in back gives forth its fruit by big bowl-fulls every night. The little black raspberries produce only half a cereal bowl-full every few nights.

I used to pick blueberries with my Dad, so berry pickin' always brings back fond memories of our time together in the rural backroads of New Hampshire. I'm sure that, as a gangly, skinny kid and as a busy teenager, I took my time with Dad for granted and did not deeply appreciate those special moments where a lot more than berry-pickin' was taking place.

Stories were being told, tales of Dad growin' up out on a farm. Ghost stories and funny experiences were interrupted by the appreciative "mmmmm's" and "that was a good one!" that burst from our blue mouths and blue teeth.

We had a tall blueberry bush out in the back field, that stood at least 8 ft. tall. It was thick from a multitude of stalks that grew up from the roots and one had to carefully reach way over the top branches to snag the perfect, delectable morsel of nature's fruit. We always had old lard cans which featured a bail, or swinging handle, over the top, and no one who has spent any time at all pickin' blueberries can forget the "ding" you'd hear when you first started dropping the berries into the can. Raspberries are much too soft to make a sound, and you treat raspberries differently than blueberries, anyway. They are tender and fragile and must be lifted using the lightest of touches from the bush to the bowl or can and placed, almost with reverence and love, into the group of delicious, juicy bits that have already made the sacrificial journey from bush to bowl.

I remember the stories and the telling, but not the exact day the stories were told. I just grew up with them, and probably heard the same one over and over. Maybe my Dad was like Jim, our old horseshoer years ago, who loved to tell jokes he'd garnered while traveling all over the county shoeing horses. Once, I remember he launched into a humorous tale, and I told him with a smile, "Jim, you told me that one already!"

And Jim replied, "That's okay. It's a good story and I want to hear it again too!"

I thought blueberries and Dads would last forever. My Dad made his trip to the other side in 1996, but just a few months before he died, he made an offhand comment that I never forgot.

He said, "There's not a day goes by that I don't think about my father."

He was 80 years old when he made that observation, and his father had died of a cerebral hemorrhage while he was out in the NH woods cutting firewood at least 40 years earlier.

It's been 14 years since I've seen Dad, and I know exactly what he meant. I'm guessing anyone reading this who has lost a dear Dad or Mom knows what he meant, too.

Something to shout about!

2010-07-18T20:07:00.000-07:00

Well, I'm just plumb excited!

With the autonomic dysreflexia, I can't let myself jump up and down and say YIPPEE, but that's what I feel like doing, so you can just imagine it.

My work comp has authorized me to get a power mobility scooter. The ones I've seen have been less of what I'd think I'd want or need, but I figured those were my options. But the wonderful fellow who runs the scooter store showed me a link to one called a "Wrangler."

Now, with a lifetime of wranglin' horses and cows and dudes, doesn't that sound like a rig that is meant for me to ride? You can see the photo I'm posting of it, above.

It's got 13" pneumatic tires and high clearance and rugged terrain tread.

It's got a high seat back with a head rest, which I simply have to have.

It'll go 10 mph, tho I doubt I'd do that. I used to be a risk-taker, but no more!

The batteries have a range of up to 20 miles!!

I can just see me tooling along somewhere in the beautiful woods, down an old logging road,

leading my dog alongside. I am starting to cry just thinking of the chance to be out in the woods again, on a quiet electric scooter!

tee hee! I even asked for "Viper Blue!" I guess I'll have to get a helmet for riding it...

yahoo!

And a few more!

2010-07-17T16:07:00.001-07:00

One can never get enough American flags and rodeo queens, can they?

Our local parade

2010-07-17T16:01:00.000-07:00

We live in a small town.

3500 people. Not a stop light in the whole county. Not a movie theater, either. We have to go to the next state to watch a movie. Really! Of course, we live just ten miles from the Oregon line, which is a huge river known as the Columbia.

Last weekend was Community Days here, and here are a few photos from the parade!

All the news that's fit to print

2010-07-17T15:33:00.000-07:00

Early this week, the fellow came to have me try out a mobility scooter. When he arrived in a his Subaru wagon, I was surprised to see him heft out of the passenger seat up front the pieces of a small wheelchair! Chris is paraplegic and so cute he'd make a fine actor! He told me he is 39 and I told him, I was guessing you were 23! He said his wife just had twin boys 10 months ago, and he spoke during his time at our house of things he does outside of work, like boating and skiing.

I figured out that he is a motor-head, so I told my husband to show Chris his V-max motorcycle in the shop. We had a nice visit in the shade of the shop, next to the motorcycle and our "new" car and all of Pete's tools and such. Chris said he got his spinal cord injury when he was 14 and was in a car wreck. He understood so much of the things I was talking about, that usually folks don't "get." He asked me if I could do hippotherapy and I told him that I think being near the horses would be too hard for me emotionally. He said he understood that because he can't play wheelchair softball even though he was passionate about baseball when he was growing up...for the same reason.

I was fine with the scooter he brought, but asked for one with suspension, an obvious need for anyone with an upper-C-spine injury or broken neck. I'm thinking this will be something I could go down trails a-ways on....that once more I'll be able to see "what's around the corner."

I was always a "what's around the bend?" kinda gal....a drive that kept me out way too long on rides and causing me to come home late, thus resulting in worry for my family. What's around that corner? What does it LOOK like? what am I missing? Maybe this trail will end soon and I can feel like I saw all that I could this day?

So, I'm thinking perhaps I can use the scooter for a small bit of "bein' out in the woods" again, and also perhaps I can walk my dogs that way, though it would be a hassle to haul the thing down into town. Where we live, it's all pretty rough and hilly and on the road, there are no shoulders to walk down.

I had my six-month appointment with Dr. Fu, my oncologist. Something spoke to me that day, warning me that my tests were not going to come back "fine" this time. And so, I wasn't shocked when Dr. Fu said that my M-proteins had spiked. They've never spiked before, so in 6 months, they went from an undetectable level to 19.5 mg/24 hour urine. I don't know what that means. Dr. Fu said "You are still a long way from a myeloma diagnosis." But all multiple myeloma starts with MGUS (which is what I have, an anacronym for Monoclonal Gammopathy of Undetermined Significance." But not all MGUS ends with Multiple Myeloma. Most MGUS increases at a rate of 1% per year, though the ones that evolve into myeloma increase at a rate of 20% per year. How my stats, of increasing from nothing to 19.5 mg, fall into that ratio, I don't know. I'm not really worried about it. It is what it is, and if there is nothing else that my journey with my injury has taught me, it is that there is no use in worrying.

I am scheduled for another 24-urine and blood labs in six months to see if the spike leveled off or is continuing to climb.

My pain mgmt team at the cancer center is awesome! I am now taking an oxycontin (long-lasting oxycodone) in the AM and PM along with 4-5 oxycodone during the day for breakthrough pain. I'm taking nortriptyline at night, which helps with the pain in a tremendous way, and also helps me sleep.

I've had a lot of company, which I've really enjoyed this year. Tomorrow, a dear friend is coming to see me from her home in Oregon. I have not seen her in almost 4 years! She and I played together in a little bluegrass band in California when I lived there. The injury has taken away my ability to play music, but my friend still packs her guitars around in her trunk as she drives, ready in nan0-seconds for a jam session.

Did I tell you already that we have a fun project this summer? We bought, a couple of months ago, a 1969 camp trailer. What a project!! It's 41 years old and looks like it feels every one of those years! Well, I should say, "looked" because we've been working on it almost daily. Too much to describe, but it's been such a labor of love, and as I work, I think of us living in this trailer next year when we drive up to Alaska with the dogs, hopefully staying a couple of months this time.

It's an Aladdin "Casbah" (model) that is 16 ft. long, and has a full bath and shower in the back. I love everything about it! We bought it from the coastal part of Oregon and now, that was just plain stupid! Dry rot? Yes! Rusted everything, including every single staple in the lovely birch paneling? YES! I have taken off all the cabinet doors and Pete buffed up the hinges to get the rust off of them, and I have painted them all, along with the knobs and other hardware. I painted the doors, too....and put them all back on. We had to pull out pieces of the wall to remove the dry rot and put in new support beams and new paneling and such. We have painted the 4-burner stove black and the front of the nice, big fridge black, as well.

And anyone who knows me knows that I have already painted silhouettes of moose and bear on some of the cabinet doors. Oh, and pine trees, too!

I also am hoping we can pull it down to CA to see our son in a couple of months and park at the beach, and have him and his wife join us at times. I'd love that! Making campfires at night, making S'mores, and visiting and getting reacquainted with each other.

Our spring was nice and cool here and oh, how I loved that. Now, the days are heating up and the AC is cranking out the cool air. I'm so thankful for the AC! I've had alot of times "paying the fiddler" for the work I try to do in the garden, especially when people are coming for a visit and I want things to look as good as I can. Perhaps that is something I've learned this year, learned the hard way: that loved ones come to see us and not our flowers and don't even notice the weeds. Or if they do, they don't mention it. That is why we LOVE them!

God bless you, dear reader!

What I learned today...

2010-07-01T21:54:00.000-07:00

at pain management.

It helps to write it down so I might remember later.

My wonderful pharmacist/co-pain-manager told me that I still need to rest. Even if I feel better because of the meds, I need to still lie down, get the weight of my head off my spine and rest.

He could tell that from my telling of the events of last week, that I am an over-doer (being a past over achiever and work-a-holic).

I had somehow thought that the meds would take the pain away and I could do more...get out and do more...achieve and accomplish more...do those things that produce those good ol' endorphins that naturally deal with the pain, though only for a moment and then the fiddler must be paid.

I learned that the things I so love to do are my enemies. I learned that those things I love to do cause my pain. Perhaps like a woman who is obsessed with a man who is no good for her, I need to learn to walk on the easy side of the street and avoid that fatal attraction.

And now, I've forgotten the other important things I learned in their office today. I'm sure it will come back to me later and I will add it to this post. I remember it was an epiphany, just as the one I just mentioned was.

Pain Management

2010-07-01T20:45:00.000-07:00

Today I went to my new PM folks. They are simply wonderful.

As I've written before, I see a Physician's Assistant (PA) and a Pharmacist together each time we meet, and they ask me pointed questions which, in the end, make a world of sense to me. Nina and Eric are their names. Good folks.

I am now taking Oxycontin with oxycodone for breakthrough pain, along with nortriptyline at night for sleep (and controls the pain during the night). I also take 90 mg of Cymbalta.

I had a rough two weeks since the last time I'd seen them. I had a good visit with my mother (from NH) and my sister (from Hawaii), and then a very close friend from Maine came to visit, along with her husband.

I would have been okay and recovered from that, but I did a "number" on myself when someone locally wanted to trade his property for ours. I love where his property lies, in a pine forest with no lawn or flowerbeds to care for, only pine needles. Just what I need.

The yard here is too much for me to take care of. My husband mows the lawn, but I try to take care of the watering and light weeding. I love gardening, but it's truly too much for me. When I try to do some weeding, I lie down next to the flower bed and pull weeds that way sometimes.

So, I think having a yard in the middle of some pines would be just what I needed. That any energy or strength I might have could be used for some easy walking. And that's another thing, we don't have any easy walking here. The road is too busy, and it has no shoulder to walk on. And across the road is a great place to hike, as it leads down into a canyon and back up the other side, but all of that is beyond what I can do now.

Back to the other day and how it affected my pain level.

I weeded in the yard one whole day and I did housework for one day as I prepared the place to be seen by a potential "trader." The one night, I was up at 9:30 pm weeding!

My hands swelled up and were so weak and painful!

As it turned out, though the other guy did want to trade, we did not. We loved the land at his place but the house was a triple-wide manufactured home and that was simply too big for me to take care, vac the carpets, etc.

As I looked back, though, on the days I spent preparing to show our place, I realized that I was obsessed and was having a serious lack of good judgment when I worked so hard. The pain is still with me, though it lessens each day, as I pay the fiddler for overdoing.

I asked my husband to strongly tell me to stop working so hard if I ever go into that mode again. He said I've worked that way all of my life, which is true. But "no can do" anymore!

So, the pharmacist today decided that we should keep on with my meds and dosages the way they are for now, because it is hard to measure their failure or success when the last two weeks were not the "norm" for me. I thought that made good sense.

I began to cry big ol' juicy tears at the end of our session, just because they are so nice. So caring. I am so labile any more. I cry at anything, almost. And especially when I am around people who are sincerely kind to me.

Long time, no write

2010-06-30T19:51:00.000-07:00

Okay, this has been terrible....soooooo long since I've written. Now, I have a good reason. My hands have gotten really bad, painful and weak. But, I will just write some short updates and that way, for those who follow here, if you are still around, you get updated.

The results of the sleep study were that I have Central Sleep Apnea. I knew I did, but this was the first official diagnosis of it because the other sleep study I had done, the techs were very inefficient and the sleep clinic closed down two weeks after I was there, so I never got a true analysis.

From the Mayo Clinic website:

Central sleep apnea is a disorder in which your breathing repeatedly stops and starts during sleep due to lack of respiratory effort. Unlike obstructive sleep apnea, in which you can't breathe normally because of upper airway obstruction, central sleep apnea occurs when your brain doesn't send proper signals to the muscles that control your breathing. Central sleep apnea is less common, accounting for less than 5 percent of sleep apneas.

Central sleep apnea occurs when your brain fails to transmit signals to your breathing muscles. Central sleep apnea can be caused by a number of conditions that affect the ability of your brainstem — which links your brain to your spinal cord and controls many functions such as heart rate and breathing — to control your breathing.

The doctor offered me the CPAP machine, said what I have warranted it. But also said if I didn't want it, he wasn't going to push it on me. I didn't want it!

Scenes on the way to Sleep Study appt.

2010-05-06T14:53:00.001-07:00

Quick notes

2010-05-06T10:09:00.001-07:00

I have written down a few notes of things I want to publish here, but never seem to get around to doing. So, here are a few of them in random order, for whatever they are worth.

It was while I was sitting in the waiting room awaiting my consult with my new NSG that I read in a neurological magazine about tau. I will not try to explain anything about tau here, but I trust the reader will do so for him/herself if they are intrigued.

I read that the presence of tau in the cerebral spinal fluid (CSF) indicates traumatic brain damage.

This can be relevant for the patient who has suffered a concussion or brain injury, yet the MRIs are not showing any (or enough) lesions to impress the doctors. If you are up for a lumbar puncture and if the doctor would okay this test, and if tau is found, it can be the evidence you need.

But, keep in mind that LPs for many people are a risk, especially if you have arachnoiditis or Chiari Malformation. Check with your doctor.
**************************************************

I have stumbled upon the best home-vacuum for someone who has weight-lifting restrictions. The name of the vac is LiNK cordless by Hoover. It comes with a lithium battery, and has suction that outperforms any other vacuum I have tried. The battery lasts long enough to do a full room or two, so it's not for someone who is professionally housecleaning. However, for those of us with disabilities, we should probably be resting between rooms as we vacuum anyway. If you are like me, I vacuum one room, then leave the vac waiting in the next room until I have the energy or "spoons" ( http://tinyurl.com/ybn8a6z ) to do more, which means the vacuum sits in that room for two weeks or a month!

This vacuum doesn't use bags so you don't have to purchase those. It has a plastic cone that creates a tornado of suction that fills the clear plastic cup quickly of debris and dirt, pet hair, etc, from your carpet or rugs. You don't have to touch the stuff to dump it into the trash either, you just hold it over the trash can and press a button and the contents spill out into the trash. I love it!

No cord to mess with so you don't have to bend over to plug into outlets. The appliance is relatively light in weight. I think it'd make a great gift for an elderly loved one, or someone who is disabled. The cost, I believe, was about $130-150 retail.

********************************************

A blog reader and e-friend sent me a great book, titled The Bear's Embrace; A story of survival written by the late Patricia Van Tighem.

Do you know of someone who has experienced a "near-death" experience? Or perhaps you have, yourself? Look for this book on the internet. It has been re-printed many times with various covers, I noticed. It's a fascinating read especially for someone who has suffered Post Traumatic Stress Disorder.

As Ms Van Tighem wrote and described her symptoms after the vicious attack by a grizzly bear while she and her husband hiked in Canada, I knew before she related the tales of the eventual diagnosis by her doctors that the author was suffering from PTSD.

This is a tragic tale, especially if you find out (as I did, later, when I looked up the author on the web) that eventually, Ms. Van Tighem committed suicide due to her condition 7 years, I believe, after the bear attack.

This is a great book for family and friends who believe that once a person has gone a certain time after his or her "near death" event, they should pick themselves up by their bootstraps and move on. They should "get over it!" This book emotionally and graphically tells the tale of our struggles with the mind.

If you are the PTSD-sufferer, then this book will put into words your story.

And, if nothing else, it's simply a great read!

Thanks, Lisa!
*********************************************

Also related to this topic is a thought I had and wrote on my list of things to add to this blog.
The thought came to me, after reading the above book, of the fact that when cougars, big cats of all kinds, bears and wolves go "for the kill," they most often go for the skull base area. The back of the head.

I have so often felt and oft-mentioned to people that I believe that region to be the center of all life in the body. Injuries there can and do affect every part of the body and all systems. (Often, less-than-knowledgeable doctors will say that injuries in that area cannot cause symptoms in the lower extremities, but they are wrong. My new NSG ... or I should say "ex-new-NSG" said the same thing to me...and he is wrong. I have read medical articles that state if someone has injuries high enough up in the Cspine, they will cause "below the waist" symptoms...and I know it from my own experience.)

The wild predators of this world know where the source of life is within the bodies of their prey. And we can take that to the bank.
*****************************************

Another note I made while sitting in the waiting room for my NSG (he was four hours late for my appt that time due to an emergency surgery) came from reading another short piece in Neurology Now, I believe.

It spoke to those of us with skull base issues (ie Chiari Malformation or someone with cranial settling, cranio-cervical instability, retroflexed odontoid, basilar invagination, traumatic injuries to the area) stating the importance of not-trying to get the last sip from a bottle or soda can.

Lifting your head up and back is exactly what you should not do if you have skull base issues.

Rather, use a straw to get that last sip, or forego the delectable pleasure of stealing that last, delicious sip!

********************************************

When I got my dog, Mickey, I was driven north to a town 80 miles away for an appointment with an orthotist, to get my new (at the time) CTO (cervical thoracic orthotic) (or "big honkin' brace"). I asked before I went (who drove patients to doctor appointments for the county) if it would be possible for me to carry home a rescue-dog that the shelter volunteer would bring to the doctor's parking lot.

I was told that it was against policy for the driver to take a patient anywhere except to the actual doctor appointment, and that pets were not allow. However if it was to be a service-dog, then it would be allowed.

The kind lady on the phone (ours being a small and scarcely-populated county) told me, "I'm sure that new dog qualifies as a service dog in some way! Yes, we can do it!"

I've had that dog for two years now and he's been such a blessing to me. Heck yes, he's my service dog! He follows me everywhere I go, from room to room. I simply cannot go from a room without him at my heels, even two years after we picked him up.

I blogged about this when I first got him, but to refresh, this dog had been left in an orchard after the fruit pickers had moved on. When found, he had a scar almost all the way around his neck/throat. Most likely, someone had neglected to exchange a too-small collar for a larger one as the dog began to grow too big for the puppy-sized one. That's my guess, anyway. He has a white-hair line around his throat to remind me, but I doubt he remembers. He's the most forgiving and loving dog I've ever had.

Mickey is a standard-sized Dachshund, and people who see him often remark they've never seen one like him. Most people think of Dachshunds as the miniatures most often seen these days. Mickey weighs 35 lbs. and is black and tan in color. I think he's the most handsome thing going!

When I lie down for my naps each day, Mickey is instantly at my side. He crawls under the covers and stretches out and places his warm body all along my back or side. This is so comforting, I can't describe it! Often, my pain is centered at the small of my back, where I had the tethered cord surgery, and Mickey seems to instinctively know that.

Yes, he's my service dog. He's smart enough he'd do anything I might have the energy and strength to train him to do. That, however, is the rub! But what he knows and shows that comes straight from his loyal heart is "just what the doctor ordered!"

random updates

2010-05-06T09:27:00.000-07:00

I need to get updates on here, but being at the computer has become more and more painful.
So, I will just copy/paste a note in here that I just rushed off to my sister. It won't be very prettily-written, but it is an update of sorts.
**************************************
Being on the computer just seems so much harder than it used to. My husband has suggested a laptop, too...but I think looking down at the screen and typing with arms moving will be hard no matter where I'm at. But in the future, that might be something I'd like to look into.

I thought that the atty was talking like he'd get me anything to make my life better, after they found me 100% disabled, but I sent in a scooter proposal and have heard nothing yet. I wished I had had one when we went to the car show in town a couple of Saturdays ago!

Let's see...I went for the sleep study a week ago, last Thurs night. The tech gal told me I do have apnea, both central and obstructive. I go back to talk to the sleep doctor when I get back from AK.

I was surprised to hear them say I do have apnea since these tests always seem to show up with nothing. I guess that proves the brainstem compression that [the new NSG] denies I have. And Dr. Shelat in NY showed us very clearly on the MRIs...

Friday, [my husband] picked me up early at the hospital and we went home and I think I went right to bed.

I think the weekend was uneventful, I can't remember any of it now.

Monday, both [my husband] and I went to our primary to get new RX for our pain meds since we'll be getting back after the RX runs out.

We went to town yesterday to fill the RX, and met with opposition because we were told it was too early to fill it, insurance wouldn't allow it. We went to our reg. pharmacy and they were willing to fill one. So it goes.

It was sooooo windy and stormy all weekend and then yesterday too, big black storm clouds all across the plains and occasional squalls we drove thru.

The hills are lovely and green and covered with flowers!!

"Thinking in Pictures"

2010-04-23T11:50:00.000-07:00

I picked up a book in the lending library on the neurosurgical floor at OHSU. The title is "Thinking in Pictures: and other reports from my life with autism," by Temple Grandin.

Those who have children with autism are probably familiar with this author and perhaps this book. If not, then I highly recommend it, but the author is so well-known, it's hard for me to believe that parents of autistic children are not aware of her work.

She is also well-known to livestock producers, and hence, to me. I became aware of this remarkable woman at least 20 years ago as my husband and I started on a journey of enlightenment on the topic of cattle handling.

Ms. Grandin is a heroine in so many senses, but especially so since she turned what might have been perceived as a curse (autism) into a blessing. Her way of looking at things and experiencing life has given her insight into the way animals see the world. With this knowledge, instinctual and profound, Ms. Grandin began to investigate the way cattle were being handled through steel alleys, corrals and chutes. I won't go into the theories of her radical ideas here, but will mention that over the span of time and decades, her changes to livestock facilities have proven to work and result in much less-stressed cattle. Her curved alleys, sweep tubs and squeeze chutes have less impact on the cattle and cause less frustration and labor for the handlers. In the cases of slaughter facilities, less stress and impact on the cattle means a better product, and most of all, a more humane way of doing things.

However, having said all of that, I'm writing about this book in this blog for a different reason.

As I began to read about Ms. Grandin's life, due to my interest in handling livestock, I became aware that so much of what she was describing of challenges for those who are autistic seem to relate, at various levels, to my own struggles with traumatic brain injury. I have not finished reading the book, and already I plan to read it again as soon as I am through. I have marked a few places that really speak to me, and which I want to chronicle here.

As we all know, when someone writes and describes something that we are dealing with yet lacks the words and skill to describe, it is a wide-eyed discovery. I feel as though I have found something that truly applies to me, that someone is speaking my language. I definitely feel less alone.

Could it be that certain, acquired brain-injury defects actually resemble the congenital defects found in the brains of those whose challenges lie found on the autistic spectrum? I've never thought of it before, but why not?

Ms. Grandin suggests as much in her quote from page 137 the book:

According to Antonio Damasio, people who suddenly lose emotions because of strokes often make disastrous financial and social decisions. These patients have completely normal thoughts, and they respond normally when asked about hypothetical social situations. But their performance plummets when they have to make rapid decisions without emotional cues. It must be like suddenly becoming autistic.

I have made many notes from Thinking in Pictures and hope to make a follow-up post soon here to reflect upon the many similarities between various, high-functioning levels of autism and Mild Traumatic Brain Injury.

Update since my NSG appointment yesterday

2010-04-13T09:05:00.000-07:00

As you know, the last time I went to Portland, OR (OHSU), the neurosurgeon (NSG) surprised me by saying I needed to have screws put in place to hold my head more solid on my spine, that he was advising me to do this, that it has been six years and no one has done anything to help me and I need to go ahead and get this done. (this was surprising to me because I have not had anything happen for me, surgically, to correct the problems of my non-union breaks in the C1, and because this surgeon had told me on my first visit to him that there was no way he'd perform surgery on me).

I felt very positive about surgery and life in general since he said that. On March 22, I had a new CT scan of my C-spine done at OHSU, so I went back yesterday to hear if they had found anything new on the CT, and to ask a few questions about surgery, and then I planned to tell him to schedule me for surgery.

Why this happens to me, I just don't know. But yesterday, the NSG was very different. He was nice enough, but he spent a lot of time (and kept coming back to it) telling me that there is a risk I could die from the surgery or I could have a stroke and be paralyzed, or I could go through it all and come out worse than I started. I don't know if he felt, in retrospect, that he had previously been too encouraging about the surgery or what. But this time, he was the opposite. And he seemed kind of ignorant of the whole thing.

So, I ended up not feeling as confident with him as I had been before, and he instilled a lot of doubt in me from telling me over and over all of his caveats. "I DO make mistakes sometimes," he even said!

Obviously, I didn't schedule surgery!

He mentioned that I should have an injection at the back of the head to see if that alleviates any pain back there. That would indicate what the surgery might do for me, he said. I had been wary of having any epidural shots due to my arachnoiditis, but he said these shots are into the muscles and nerves only, not in the spinal canal. So, I am thinking I might try these injections. Maybe they will be successful and the way I should go.

As he panned over the mid-sagittal image of my entire Cspine, I saw something that looked out of place. He was panning quickly, as the imaging program allows. As he panned past that place again, I noticed it again. When he, for the third time, panned past it, I called attention to it.

With pen pointing to the questionable area in the CT, I asked, "I know this is the odontoid, this is the anterior of the C1 and this is the clivus, but what is this bone? I've never seen that there before?"

He replied, "Oh, that is bone that is not supposed to be there. It is probably something grown by your body to try to stabilize your skull."

Indeed, it did look like chinking, a pretty big piece of bone lying in the "V" between the front of the C1 and the front of the skull (clivus). I asked my NSG if that could be causing any problems and he said no, "There are no nerves in that area." I am wondering now if this blob of bone could be affecting my swallowing perhaps, as an actual obstruction (instead of brainstem compression).

I also noticed how much closer the tip of the clivus (part of skull in front of the foramen magnum or "hole" in the skull that allows the nerves and spinal cord to run down from the brain through the vertebrae of the spine) is to the tip of the odontoid.

The odontoid is the front piece of the C2, around which the C1 rests and it all acts as a joint/cog that allows the head and neck rotation we are used to. It looks like a big finger sticking up and it is supposed to be quite a few millimeters away from the clivus/front of skull. I have been watching this with interest over these last years, whenever I get new imaging done, because as that space narrows, it indicates cranial settling, ie that the cranium/skull is settling down onto the C2/odontoid. I have watched as that space narrows on me. No doctor is as interested as I am, and quite frankly, they don't like it when you point things out to them anyway. THEY have hundreds of patients to think about and recall their imaging. I only have MINE. And I know it very well.

I did ask my NSG yesterday about that space narrowing and without any deliberance, he stated simply, "You did not break the C2." I knew that. But I am also very familiar with some of the signs of settling, which does not have to have anything to do with a C2 break.

oh well....insert long, drawn-out sigh here...

All in all, I have lost faith in this doctor. I liked how congenial he was, but that is not enough. And I didn't like how he started to rush me out after 15 minutes, which he has done the other two times I've seen him. How can I figure these things out and help my NSG to do so, when he only wants to spend 15 minutes with me? Such as my questions about the new blob of bone that is "not supposed to be there?" A blob of bone that he did not see and I was able to point out to him?

So, I'm sort of in limbo-land about that right now. I had built up a lot of hopes about surgery (again!) but I guess I've learned not to invest too much until the deal is sealed!

What a turn about, huh? anyway, I wanted to let you know, and I'll keep you posted. Thanks for caring and for your prayers. I'm doing just fine, it's just another jog in the road and I'm used to that!!

Delk?

2010-03-21T09:33:00.000-07:00

We have these deer in our back yard lately. The little one, last year's fawn, is running with a doe from the previous year's crop of fawns.

We've never seen a deer colored like this. She is not shedding off, and doesn't have mange or something. I know because she came right up under my window and I took photos through the glass of the window, sneaking the camera between the slats of the mini-blind. This lighter colored hair is fluffy and long.

She has this striking pink-hued hair over the middle and back part of her body. And I didn't get it on camera, but the white under her tail is amazingly white, even when compared to the white under the tail of her friend.

The front half looks just like a normal deer in this region.

We do have elk here, though have not seen any in our yard yet. This yearling almost looks like a cross between an elk and a deer, since the back part of the body is lighter than the front. I am probably way off, that probably doesn't happen. But it is fun to watch her! I'm afraid she may not last long, colored the way she is. She will stick out to predators like a neon arrow!

And we DO have predators here! A couple of weeks ago, a cougar was killed 3 houses north of us, and the newspaper is reporting a cougar hanging around town (we are at the very end of the city limits of this little, country town). Across the road from our home, there are miles of wooded canyons with rocky cliffs and dense brush. I've often thought it would make an ideal habitat for a cougar.

My feelings about cougars is this: if they are coming right into your yard, looking in your windows, hanging out under the porch to sneak a bite of your dog, then they need to be shot and killed. You can't hardly "relocate" a mt. lion, their range is 100 miles radius. The local big cats need to be "trained" to stay away from humans and homes and shooting one to do that is probably the only way to do it. The lion shot in our neighbor's yard came into a yard full of lion-hunting dogs, so confined dogs don't seem to scare them away.

But I am absolutely against killing cougars in the wild, away from town. I guess if I had a herd of sheep and one was coming in and killing the sheep, again, I'd want to shoot one. But just to go out and hunt and kill one because it is a cougar, no way. I love them so much and they are just part of nature, a sign of a healthy ecosystem.

I've only sighted 3 cougars in my life. So much of my life, I've ridden alone or with a riding partner up high in the mountains or in the desert. At other times, my horses have left their tracks on lonely plateaus or crossing canyon streams. I have watched the cliffs and rocky outcroppings for cougars, and rode for 30 years before I spotted one, and it was just a quarter mile, if that, from my home in north-central Washington state.

A few weeks later, I saw the same cat hunting a deer on a sage-blanketed hillside about a half mile from our ranch.

And, we saw one last year crossing the road in front of our car about twenty miles from our house here in south-central WA.

I love these elusive animals!

The NSG report

2010-03-18T18:52:00.000-07:00

I remember clearly when my old NSG in NY told me in January of 2007 that if I were in a car accident, my C1 would slice through my cord and kill me. He also told me if I fell off a horse again, I'd die. That was the day I gave up horseback riding. I never rode a horse again when I got home and still haven't.

When I sat in his office last June with my sister beside me, and he was telling me that my C1 was all healed, that bone had grown into the empty spaces in my C1 ("spontaneously healed", he wrote in the report), my sister asked if there was still a concern about my being in a car accident. He answered, "No, that has all healed, has all filled in with bone."

My sister asked that, I'm sure, because she is always so nervous driving me anywhere, feeling like she has my life in her hands. You know, the white-knuckled ones gripping the sweaty steering wheel!

When I saw Dr. R in Portland on March 8, he told me that if I fell off a horse, I would not be killed, I would not break my C1 again (how can it break again, it's still in 4 pieces, he tells me). He said I wouldn't die of a broken neck in a car wreck, either. My husband had told him what the NY NSG had said, and he'd asked the Portland NSG if he agreed with that. Dr. R was quick to disagree with the NY guy.

"Naw, that's not true!" he said.

Then, I got my hands on a copy of his report to my PTP today. I read, "She asked about cervical spine instability, I explained that the flexion extension views of her cervical spine from 11/09 did not show any evidence of instability, so I believe her chronic bone non-unions of her old fractures of C1 are not grossly unstable, but could potentially be at risk of catastrophic failure under the right conditions (e.g. MVC)[sic]."

Did he tell me that and I have forgotten it? My husband doesn't recall it either. I suppose he reported that he told me something he didn't because he was so busy. Remember, he was in surgery that day and I had to wait four hours to see him. I know all the other patients there must have backed him up late into the night and then to dictate his reports from the consults, it all probably means fatigue was a factor.

But it looms kinda dark in my mind: "catastrophic failure" under the right conditions, e g motor vehicle crash.

Catastrophic Failure of the C1. Vivid imagery indeed!

I have to admit, yesterday, I remembered the NSG saying I would not necessarily die from falling from a horse and my husband was sitting right there, so he heard it too. In my brain yesterday, that meant (I must be slow, since I was connecting the dots ten days after seeing the NSG) that I could get a horse some day! If I got better and stronger and could take care of one, I could get a broke horse and ride again!

My mind leapt from possibility to gleeful possibility. The door seemed to open into a whole new future and it included HORSES again. I'd forgotten the doctor said that, and now I could take those words out and have fun with them, glean future hopes from them. And I did so, with gusto, sharing my feelings with my husband who just remained silent as we were driving along.

This morning, I considered our fenced, back 3 acres and how great they'd be for a horse!

I got to enjoy those hopeful thoughts for about 15 hours, until I read the NSG's report and saw the words "catastrophic failure." I know my husband will not want me riding horses again because of those 2 words.

Up until now, nothing had been put into writing. Though the NSG in NY had said those words about hypothetical car accidents and horse wrecks 3 years ago, he'd never written it out.

I am leaning more and more toward having the surgery. I don't know this doctor much at all, though I did a bit more research about him online and did find he authored a paper on occipital-cranial fusions in infants. He's authored a lot of other medical articles, as well.

I perhaps don't have the faith in HIM that I had in my last nsg. Maybe that's a good thing. Having a ton of faith in the last one didn't do me a whole lot of good, frankly speaking. And I need to be having faith in God above, need to keep my priorities straight.

I'll let you know what I decide, you can be sure of that.

A friendly chat with my PTP

2010-03-18T18:18:00.000-07:00

PTP = Primary Treating Physician aka California workman's comp speak

Today was my day to travel just a mile or two down the road to my PTP. He's been handling my care since we moved here 3 years ago. He never has really done much, or listened to any complaints. His MO is to figure out what specialist he feels I need to see and then ship me off to them.

That's okay. It's been working so far. But I do have to see him once a month to have him renew my oxycodone RX. And he's let me know that he doesn't like being the guy prescribing narcotics and that he wants me in pain management (PM).

Which I'm fine with, but I live 1.5 hours from one PM and 2.5 hours from the other (in the same building with my new neurosurgeon - NSG). And I have been in such pain and feeling so weak, it's difficult to imagine myself on the road to either of those places every two weeks or once a month, along with going to Portland for the NSG.

Before the PTP came into the room, as usual, his nurse took my blood pressure and was surprised by how low it was: 98/30. I've never known my BP to be that low. Then I remembered that right before I left my house to come to the doctor's, the back of my head started to hurt strongly and an intense burning was all over my scalp, I felt weak and then I felt pain all down my right side, especially in my right leg. It stayed with me, or the remnants of it, as I waited in the lobby at the doctor's office. Could this low reading be a sign of another autonomic event? I used to take my BP as soon as possible after I felt the familiar (I get them twice or more a day) symptoms, and my BP would be very high, one time it was 182/159 and I figured that was a couple of minutes after the peak of the "event" or experience; ie the burning prickly scalp and weakness.

[I think I explained some here about autonomic dysreflexia in a past post. Briefly, it is an interruption in the signals going up the spinal cord to the brain, when the brain needs to regulate the blood pressure and heart rate when the body responds to something shocking, surprising, tight clothes, full bladder or bowel, heightened emotions, etc. The brain needs to regulate the heart, but it never receives the signal from the spinal cord because of the "short" in the cord due to lesions found in spinal cord damage. Thus, BP races up sky high, and in some cases, death follows. This is often found in quadraplegics and paraplegics.]

I wonder now if my BP was so low because of this lack of regulation...that the BP had shot up for some reason (hence, my symptoms), and then as it came back down, it kept going down. All I know is, I have never had such a low BP reading.

When my PTP and I settled in to talking, I mentioned the low BP reading but he did not say a thing. He flipped back to my chart, saw the reading, shrugged, and continued on with his own agenda.

We discussed my visit with the NSG, and he'd received a report from him regarding my March 8 appointment with the NSG. I asked him for a copy of that report, but I didn't get to see it while we were visiting. Later, I'll let you know some of what the report stated, some of it shockingly new to me. My PTP was so happy to see that the NSG also referred me for PM.

I told him that I wanted a script for a mobility scooter. He started in with, "This is a very hard thing to get done, a lot of people have to be contacted and it is hard to get insurance to pay for one." I'd heard this liturgy before and last time, I'd let him talk me into just waiting and see how I got along without one.

However, since I am now officially 100% permanently disabled, and since my atty told me that I should ask the doctor to write a script for anything that would make my life easier, I wasn't going to put up with that today. I interrupted him, saying, "I don't care. I just want you to write a script, and I will send it to my attorney. I am not dealing with Medicare or regular insurance so perhaps my situation will be easier. I just need you to write the script."

He handed me the script.

My PTP then told me again how he doesn't want to be the guy prescribing me narcotics (even though I am on a very low dosage of oxycodone). Then he said something that really hit me.

He said,"You need to have surgery and get this over with. I believe it's interfering with your life (I said, "sure it is! I can't do anything!) and he said, "This has all become something much bigger than it should have ever been."

And...well, I let him have it.

I said, "It has NOT become something bigger than it should be. It IS big! I should be dead! This will affect me every day of my life for the rest of my life. I'm not going to get a surgery and suddenly be all fixed. I'll continue to worsen, I know that. Don't tell me that I've made this all something bigger than it should have been!"

He avoided any response to that, too.

We left friends. He's my primary care doc for things non-work injury-related, too and he's my husband's primary. I've seen him every month for 3 years now. He's a good guy.

But, I need to figure out how to get to pain mgmt, and I might need to find a new PTP. One who perhaps would be willing to prescribe my pain medication. That would solve that problem.

I can't help but figuratively shake my head when I consider that if my PTP had just read the neurosurgon's report, he would see why I should not be out on the roads when it can be avoided. But, more about that in the next post.

How it went at my last neurosurgeon appt.

2010-03-12T17:08:00.001-08:00

On Monday, I went to Portland, OR to see my latest NSG.

I had hoped to write more carefully a report for my readers here, but have been suffering so much from the trip that I have decided to just post a pasted copy of a letter I sent to my sister. So, here you go...

You remember Dr. R the last time I saw him? He was a bit curt with me....after just talking to me for 15 minutes total, he'd said that there was no surgery he could do to help me. But he promised to look at my imaging with his colleagues. There are quite a few NSGs in that big hospital/facility.

After that initial meet-and-greet, he then had me go have some xrays done of my neck in flexion and extension. Later, I got a copy of his report from my primary and learned that after seeing the xrays, Dr. R wrote that there IS movement in the C1 when I bend or extend my neck.

Next, I had the SPECT (cervical)... and a lumbar MRI with and without contrast.

As I might have mentioned before, I set myself up mentally to expect nothing. Was hopeful for nothing. I told myself the doctor would say the imaging showed I am fine, he'd say "Why are you here wasting my time?" and then I'd go home once again feeling there was nothing to be done to help me.

We had to wait 4 hours for him. This was because Dr. R was in the OR doing an emergency surgery.

We almost went home without seeing him. My husband was so patient! But at 4 hours, to me it felt like time to head home. Then, they brought me back into the exam room (we'd been there once before when they thought the NSG was on his way, but then he wasn't able to come right then so we went back out, down to the cafe, etc, for 2 hours more)...

He came in holding my 3 pg letter I'd faxed to him last Thursday, the one posted here before this post. And he was very straight-forward, very nice and kind. He said, "You need to have screws put into your C1 and C2. You've been waiting six years and it isn't going to get any better. It's time to just go ahead and fix it."

I was shocked! I asked him if he would also put a plate into the skull base (occiput), and he said he might, that they want me to have a new CT of the skull base area and, if necessary, they will add the plate. If they add the plate, this becomes a craniocervical fusion like I've been hoping to have all these years.

I asked him how many craniocervical fusions he's done and he said, "I do them every week. I did a C4 and 5 today!" and I said, "No, not a cervical fusion, a cranio-cervical fusion." And he said, "Well, they are not seen that often...but I do one about once a month." I thought that was plenty of experience and said so.

He said he might go down to C3 with the fusion. I asked if there was bone enough in the C1 to put screws to and he said the new CT would tell them that.

I didn't go have the CT right then as he suggested, it was late and I was in so much pain. I will go back in a couple of weeks to get that done (March 22). Need to wait for the work comp to approve it anyway.

I'm not jumping on the wagon yet. He knows that. I did that at TCI but not this time, I'm going to give this a lot of consideration. I like the surgeon, I like being closer to home (2.5 hours away). I like the hospital, too, it's very well-known here in the NW. Been around a long time. Dr. R said I'd be in the hosp. 2 to 3 days. He said that the fusion would help my neck pain and would help the electrical feeling on my scalp, but it wouldn't help the swallowing problems. It would not in any way help the below the waist symptoms.

He suggested maybe I'd want to try pain management and have a lumbar injection and see if that helps my pain below the waist. However, I have since remembered that I have arachnoiditis, and had that huge mass of arachnoid adhesions at the lumbar region when they opened me up for the detethering. Mine was due to trauma, but medical articles reveal that arachnoid adhesions are usually caused by interdural injections such as pain injections and lumbar punctures. I think I'll pass.

Oh, this was a big thing to me. He was showing me the scans and such, and had the normal mid-sagittal view of the head and neck that people with chiari use to judge their condition, and I noticed the cerebellar tonsils (not tonsils in the back of your mouth) are shrunken way up from where they were! Even from last June when I had the imaging done in NY.

I told him that, that they were way up from when I had the TC surgery and he said, "Maybe that surgery helped you then."

The big thing he showed me, and he was talking so offhandedly, like "No big deal, you must know this," but he had the pic of my C1 that I always show people the big break in it...and with the mouse cursor, he flew down to the bottom right part of the C1 and said, "There is another big non-union" (meaning break) and I said, "Really?
"
And he still acted like no big deal (I think they are trained that way so you don't get anxious). I have seen that big gap all along, but it was never pointed out to me. I thought it must be a view of a different vertebra or something that was covering up the back part of the C1 or something. So, now I know there are at least TWO big, non-union gaps in the C1.

I have a lot to think about, obviously. Dr. R said there is nothing he can see that can be done surgically for my TC area/below the waist symptoms. He can't see any dural ectasias, which doesn't surprise me since TCI supposedly fixed them. I got to ask him about dural ectasias and he says he's dealt with them in patients with connective tissue diseases, but he's never seen any as a result of trauma. I found online that they usually ARE indicative of a conn. tiss. disease, but it says they rarely can result from trauma.

I asked him if I could try Diamox for the DEs or whatever, and he said that would be up to pain mgmt.

At any rate, I felt overwhelmed in a good way. I felt validated and treated with honor and respect. Taken seriously. and also offered hope in the prospect of a surgery, which does make sense to me, and I even could imagine it could help the TC stuff, even tho Dr. R said absolutely no, he'd be very wrong to tell me there is even a possibility.

I might send my stuff to Dr. Menezes in Iowa who is supposed to be one of the #1 skull base experts in the country.

I felt dumbfounded going home through the crazy city traffic. It's been a long time since I have talked to a NSG and had one agree to do anything for me.

And I didn't hardly cry. Thank you Jesus!

Letter to my neurosurgeon...

2010-03-09T08:26:00.000-08:00

Last Thursday, I faxed a 3 page letter to my new neurosurgeon. I knew I'd be seeing him on Monday, March 8, and I knew there were a few things that I wanted him to know up front, when he would be considering the new imaging done a few weeks ago, the lumbar MRI and the cervical SPECT scan.

Here is the text of that letter, with my doctor's name removed for his privacy.

March 2, 2010

Dear Dr.____,

I came to OHSU and had the SPECT scan and lumbar MRI done on Monday, Feb. 22. I had to wait for authorization from my work comp insurance company, but finally got it done.
Will you be letting me know the results of this imaging?

I wanted to call your attention to one thing I was unable to share with you at our last meeting. It may be of value when assessing the lumbar MRIs. My OR report from the tethered cord surgery at North Shore Hospital in NY stated, as I recall, that they encountered 2 or 3 dural ectasias when they opened me up for the detethering. One was said to be "of significant size" and they were "weeping" CSF. The report stated that the ectasias were "repaired." I've often wondered if this is possibly part of the cause of my continuing "below the waist" pain and weakened, painful legs and feet.

I also want to mention again my swallowing problems. This is a continual problem. Several times a day when I am eating, my food does not "go down." Not every time I eat, but several times a day, each day. I have chronicled and reported this problem to doctors for about five years. I was sent to an ENT who pronounced that my problem is neurological, not structural. I have been told, in the past, that this is a symptom of lower cranial nerve dysfunction.

What happens: I take a bite and swallow it naturally. Most of the time, this event is less severe in that I notice the food going very slowly all the way down my esophagus. I take notice of this, and wait for it to go "down" before taking the next bite. This is slightly painful or uncomfortable. I can wait for 30 minutes or longer for the last bite that I've taken, after I stop eating, to finally go all the way down and my esophagus seem to be clear. I am used to that feeling of food stuck in my esophagus most of the time, but not all, since I've lived with it for so long.

A couple of times a week, this event is much worse. I take a bite, but the food does not go down, it completely stops at the top of my esophagus. I don't notice it at first and I keep taking bite after bite, expecting, as usual, that one bite will push down the previous bite.

The food all then adds up into what I guess is called a bolus. I do NOT gag or choke or regurgitate the bolus. I do not feel any natural reflexes to do anything about it, except to wait while it slowly, painfully, eventually slides down the esophagus. This can take a very long time, like a minute. One time, I nearly passed out from this plug of food, my vision narrowed to where my vision was blacked out, but then it seemed like the food went down and I was okay.
I don't panic about it, but it does seem to block my breathing through my mouth. What is hard for me to understand is, why don't I gag on this? Why aren't I choking?

I know you tested my gag reflex and reported that it is normal. So maybe it's something different that is absent when this happens, but I really do not have any automatic reaction to the plug of food at the top of my esophagus.

This is only one of, and the most severe, the symptoms tied into, possibly, lower cranial nerve dysfunction. I also have problems, such as with taste (one day the food tastes wonderful, the next day, same food, seems tasteless. Food often seems tasteless to me). I also at times have an inordinate amount of saliva and find myself drooling from the sides of my mouth, this has presented itself more noticeably within the last year.

I have had a sleep study, maybe 5 years ago, which stated that I have too many "unexplained arousals" when I sleep. I do know that I wake up many, many times at night, not fully awake, but aware of my surroundings. One time recently, I woke up, looked at the bedside clock, went back to sleep, woke up again, looked at the clock thinking it had been awhile since I'd last looked, and it was still within the same minute, and this happened again, so during one minute I had awakened at least 3 times. I often wake up with my body automatically "gasping" for air, and it seems that I have breathed out but not taken in a breath until my body reacted and gasped for one. This symptom also has been with me for five years or so.

Beyond painful weakness in my extremities (which is always with me), and pain at the back of the head, there is one MAIN symptom which concerns me. Again, I've had this since my injury April 9, 2004. It is:

This occurs several times a day, every day, throughout the day. Many things set it off. Being too hot or flushed. A shocking realization of something new to me. Something makes me really laugh, even just inside. Crying. Tight clothing. Getting over-tired. Doing something that is too much for me. A full bladder or bowel. Many things, but there is always a trigger...

I begin to feel flushed above the site of my injury (C1), my scalp feels prickly, painfully so. My hair stands on end and is painful to the touch. I start to really sweat all over my head, I start to get a headache, I start to feel faint. I become even more painful all over my body, aching especially in the palms of my hands and my fingertips hurt. My feet become very painful. And my blood pressure really goes up. I have checked my BP at these times, just out of curiosity, and found it to be 182/152 and up. (My normal is 120/70 or less).

This is a symptom that keeps me from being in a group or crowd of people. It inhibits my participation in life in many ways. And it has been with me since right after I got hurt.
　　
Thank you for reading this far. To summarize, my concerns are:
　
1.) Problems with swallowing
Since this seems to be worsening, I am wondering if this is due to present compression of some sort, or just from the damage done six years ago. Will it continue to get worse?

2) The "problems with my blood pressure/painful scalp/feeling faint/headache/diffuse pain in body and hands and feet, etc"..... I wish I had a name for this, for one thing. I'd like to know, if possible, why it occurs and if it is something that will worsen or cause worse results in the future.

3) I wanted to let you know about the dural ectasias that had been found in 2007 when they did the detethering.
　
I am anxious to hear the results of the latest imaging.
　
Thank you

Appt scheduled with NSG

2010-03-06T11:02:00.000-08:00

[Among those in the Chiari (and related disorders) circle, we use a lot of abbreviations since everyone is weak and tired, in pain and the computer doesn't help much! NSG is shorthand for "neurosurgeon."]

I will be going back to Portland, OR on Monday, March 8, to see my neurosurgeon and get the results of the SPECT scan and the lumbar MRIs. I am prepared to hear that it shows nothing and there is nothing that can be done. I have been through so much with so many NSGs that I have become jaded, and in order to protect myself from disappointment and grief, I must prepare myself to hear that it's all been a waste of time and there is no help, not even: "We see how badly you are damaged but there's nothing we can do."

I thought I'd post here how much the SPECT scan cost my insurance company. $2885. The Lumbar MRI with and without constrast was $973. Sometimes, it helps to know the ballpark of what a test costs, so I've included that here.

I'll let you know what I find out on Monday.

Thanks for listening!

Oh what a dream by Bryan Cole

2010-03-06T07:49:00.000-08:00

An e-friend of mine, Bryan Cole, posted on the message board for Chiari Connection International yesterday, this account of a dream he had recently. I loved it and asked if I could use it. Bryan and I got to know each other through email about five years ago when we both noticed that we have "horse" in our usernames on the support group. He tells his story so well...he has endured a lot of suffering throughout his life and his faith comes through in this tale.

******************************************************

Most all my life I've dealt with a Congenital Defect called ChiariMalformation things really began snowballing at age 13
(1970).

Before that, Iplayed ball with my brother and friends but by the time I was 17, I wasn't able to do much at all. My mom had taken me to Dr's. and they ran test after test finding nothing. Then we were sent to a Neurosurgeon (Emil L.Weber) and he assured my mom he would find my problem. He did and did the surgery which helped me very much but he also said I would have limitations and he was right.

I spent 30 years working in the Pizza business, 20 years with one man, and 10 years with my own business .I also began working and eventually training Thoroughbred race horses. This began when I was a child. My Grandparents did that for a living.It was very hard work but I loved the sport.

I have never been blessed with the best of health but I have been blessed with the best family and friends a person could have. My Health began getting very bad again in 1998. I had MRI's done and the results weren't good. I have a lot of spinal cord damage due to a cyst in my spinal cord; this condition is known as Syringomyelia .

I also have a condition known as Basilar Invagination which is flattening the Medulla of the Brain Stem. I had 2 surgeries in 2009, they have helped me some but I still have a hard time walking and according to my Drs. I always will. My dad died in January '09 two weeks before my first surgery in '09. He had been very sick. He was always there for me when I needed someone to go with me to run my horses. He also liked the horses. Of course he always gave me advice which usually led to a difference in opinion.

I began going to Church with my mom and dad several months before my dad died. It is a small Church called St. Mathews. There are very good people there.

Sorry for this being so long but here is the dream part. Last night as usual I had a hard time sleeping but finally it happpened. It is very unusual for me to dream but I did and it was so real. There I was with a barn full of horses then my dad showed up with a friend of his "Snooky." I told my dad I can't take care of all these horses; he said "Son where we are right now you can do anything and you won't hurt at all."

Then I began recognizing many more people ,friends and relatives. My Grandparents were there with horses. Dad was right. I lifted feed and hay, took care of the horses and there was no pain. Then I looked at the Clock it was 4:17 AM and I am wide awake.

I never had a dream that seemed so real. I began thinking about that dream. Everyone in my dream had passed away and most were in very bad shape when they left this world. There is no doubt in my mind that the place I dreamed of was Heaven and I know when I die I want to go to that place where everyone is healthy again.

TO THOSE WHO BELIEVE GOD BLESS YOU ALL

Bryan (Indiana)Surgery for Chiari in 1974 at age 17 which I've always considered a success even though Ive always had problems.I knew little to nothing about Chiari until May 2006. Revision done at TCI in Jan.2009.

It's 11:03 pm...

2010-02-15T23:04:00.001-08:00

and I can't sleep...again. My legs and feet are on fire. I can't hold my right arm in the correct position to where it doesn't pull down on the skull base and hurt. I can't hold it there because there doesn't seem to be a right position. I might as well get up and catch up here a bit. I've noticed, though, that sitting here and typing is more and more uncomfortable. I guess I've mentioned that before.

Feb. 8 was the date of my work comp hearing and I was very blessed in that they found me 100% permanently disabled. Or, I should say, permanently 100% disabled. This is durn-near miraculous. I've been told by several professionals who should know that hardly anyone is found 100% disabled in California work comp. I thank God for a fair decision. It IS true, I simply cannot work in any capacity or earn any money at all. All due to the work-related injury.

So, that was a mighty "Praise the Lord!" It means, simply, that the bi-weekly paycheck I've received over the last "almost six years" will not stop, it will continue as long as I live, and also all medical care will be taken care of. If I'm not to be healed, then this is the best I could wish for. Thank You, Jesus!

I've had a rough month. It's hard to come here and write about it. About two weeks ago, I went one whole week without going out the front door. I didn't get dressed and I stayed in bed a lot, just from pain and weakness. When I did finally get out and about, just walking through a couple of stores shopping was enough to flare up all my spinal cord symptoms again.

But then, those symptoms and that spinal cord are just staying flared up. I can't really get away from it. I've decided that I am going to push for a motorized scooter. I saw one last summer at a car show, a woman who told me she suffered with MS was riding around the show on it, her husband walking beside her. It was a perfect little outfit, not big or heavy. They said it came apart into two pieces, was only 35 lbs, and was easy for the husband to pack in the trunk of the car and get out for his wife.

My husband doesn't like the sound of it and I can imagine why. To him, it's giving in. He's afraid I'll stop walking at all and then he thinks my muscles will atrophy and I will really be a mess. After 36 years of marriage, I thought he knew me better than that. I will always work to whatever capacity I am able to do so. I'll always make my beds and fill the dishwasher and keep up with the laundry and keep the floors clean in the house, to the extent I am able. I'm not sure I'll explaining this right, but I'm trying to say I'll always push myself just as far as my body will let me do it. He's not worried about the housework getting done, he's just more concerned that I'll give up too soon. I know I won't.

But it would be nice to have the scooter for trips where there are walks involved.

I fill my days and they rarely drag on. About a month ago, I went outside and cut several long branches of forsythia. They are just bare branches, but I stuck them into a dry vase on the floor behind the TV. As I brought them through the door, I thought, "I have an armload of nature," and now, it feels like I'm sitting in the woods watching television.

That caused me to look around my house and notice that, unwittingly, I have brought nature inside my house. Before my injury, I lived my life outside, in nature, more than inside. I worked outside each day for 10 or 12 hours. One of the hardest things, as long-time readers of this blog will attest, has been accepting my increasing inability to get out into the woods and walk or just "be."

So, without thinking about it, I have brought the outside in. I have lots of little bird figurines, and I have branches stuck into vases, pinecones overflow the bounds of baskets. I collect the birch bark that sloughs off the trees in front of the Sodbuster's Cafe down the road, and use it to decorate things around the house. I paint mountain scenes on the closet doors and wildlife on other doors. I can look anywhere within the bounds of this happy home and feel my senses stirred by the land that I have loved so much. And miss so dearly.

I was pleased to receive in the mail a copy of a new resource book just published titled Cougar. They used my poem about a mountain lion, the only poem in the book. That meant a lot to me. I am blessed left and right.

In order to make a dreary winter (these leaden skies are tiresome) pass more happily, I have made travel arrangements for my husband and I to visit Alaska again, this time in May. Sky Miles make the trip very reasonable. I've rented a cabin for five nights on Kenai Lake. They tell me we might be the only guests at the lodge at that time of year, and that the lake will still be frozen over. What a time we've had reading travel books and dreaming about things we'll see, while we also watch a plethora of Alaska programs on TV.

I've had a few events of food "not going down" again. One happened yesterday as we were out to eat for Valentine's Day. What happens is that I forget to pay attention to my esophagus. If I don't pay attention and I keep chewing food and "swallowing" it and the food is not going down, it all collects into a ball of food (known as a "bolus") which is stuck right at the top of my throat. I don't have any gag reflex, so I don't choke on it or spit it back up. I have learned to not panic and just allow it to go down on its own. It can take a very long time. While it is there at the back of my throat, I cannot breathe through my mouth. It would be easy to panic about it, but I know if I did, I would require the Heimlich Manuever or I would die. So, I just allow it to do its thing and so far, so good.

It also happened a few days ago while I was absent-mindedly eating half of a dry bagel. Didn't notice the first bite wasn't going down. Kept packing bites of bagel back in there until..uh, oh! Well, keep calm and surely it'll go down, like it has before. Lord Willing.

Finally, work comp sent an authorization for the SPECT Scan. But they didn't send an authorization for the lumbar MRI which had been ordered at the same time. Since I have to go 2.5 hours to Portland to get those done, I want to schedule them for the same day. So, I'm waiting for that MRI authorization to come in the mail before I set the appointments up. The SPECT scan is the one where they inject you with radioactive material and then 2 hours later, they do a scan and, supposedly, things will show up that just don't show up in any other way. By now, I would guess the neurosurgeon in Portland has forgotten who I am, since he ordered the tests back in November. Ah, the joys of working with work comp!

We've had a very mild winter here. In December, we had a few snows, perhaps a foot of snow at the most. But rains melted that away quickly and it has been much rainier and foggier here than we've had before. I love my house, love being inside of it, its walls seem to wrap me in comfort and security.

My last trip to my PCP, a funny thing happened.

My doc and I were again talking about my pain. He has been urging me to go to Pain Management and I have been loathe to do so. Finally, I gave in. He stood up and walked over to me, putting his hand and fingers on my neck and saying, "Where does it hurt? Here?"

(That was the funny thing that happened. I've been seeing him almost three years now and that is the first time he's put a hand on me or asked exactly where my pain is.)

"No, I mean, yes, that area does hurt, but that's not the bad pain. The bad pain is in the middle of the back of my head, to the right of center. I get burning, electric stabs of pain there."

He admitted he didn't have a clue about why that would hurt. I wasn't asking him to figure it out anyway. While he had the interest, though, I wanted to explain the worst of my pain, even more brutal than the cattle prod in the back of the brain.

"I feel all the time so much burning and aching in every muscle, every tendon, every bone, every nerve, every cell of my body. Surely you must have MS patients who describe pain like this? I never have found anyone who says they have this sort of pain, and I would really like to know the right words to describe it. Surely you have patients who describe this?"

My doctor said no, not really. He'd never heard anything like that.

Wanting to somehow paint a word picture I'm not skilled enough to describe, I said, "Well, you know how the worst flu is? (he nodded his head). It feels like that plus the worst menstrual pain I ever had (and, Doc, I know you can't relate to that one), and I've had that every day for almost six years!"

He didn't say anything to that.

What can he say?

24 hours later...

2010-01-26T19:12:00.001-08:00

What a difference a day makes.

Yesterday, posting that I am now accepting of my situation...then, today, feeling so badly that I am to the point where I have to do something!

I admit it, I'm a sucker for illustrative stories. Here's another that hearkens back to the early 1990's when we were managing a ranch in north-central Washington.

Down the lonely road from our old, decrepit farm house was a nondescript cabin, nestled near the creek. This was the employee housing for our one ranch hand, Bob. Living with Bob was his girlfriend, Judy...they both looked to be in their 40's.

Bob never showed up to work without Judy, even in the middle of the night when they'd come in the winter to check through the calving cows. She was not on the payroll, and I loved ranch work as much as the next person, but I also loved having a chance to stay home once in a while and get caught up on the laundry and housekeeping, too.

Judy never got that opportunity and I noticed it. I had times that offered me the chance to visit with her and get to know her, and she revealed that Bob beat her often. He always brought her with him to work because he was insanely jealous and feared she would leave or tell someone about their situation.

I wasn't sure what to do. I didn't want to put her in harm's way. Never having been in that situation before, I didn't know how to handle it and neither did my husband. We decided to wait and watch. And told her we'd help her if she ever decided to leave Bob.

One time I visited her and she showed me big bruises on her arms.

I asked her, "What is your limit, Judy?"

With knitted brow, she asked me what I meant.

"I mean, what is it going to take for you to leave him? To call the police? Right now, he's shoving you around and hitting you. You must have in your mind what would be the last straw. Is it when he breaks your arm? When he threatens your life? I'm just honestly wondering what it is."

A week or so later, I looked down the county road and saw police cars parked up on the road above the cabin, lights swirling blue patterns on the aspen trees. Before we could go down there to find out what had happened, one of the patrol cars drove up into our yard, with Judy in the back seat. The officer got out and explained that Judy had asked him to bring her up to our house. She knew she could stay with us for safety and until she got things figured out.

After the cop left, Judy explained that that afternoon, Bob went into a rage and pulled a knife on her. She told me that my words came back to her mind, and she thought, "Okay, this is it! This is the point where I say no more!" And she called the police.

Bob went to jail, and Judy did some work for us on the ranch until she had some money to go back to her home and family in the eastern part of the state. Bob had purposely pocketed what little money they had when he knew the police were coming, leaving her nothing.

I thought of this story as I laid achingly in bed today.
I was too weak to get dressed....again.
I didn't step out the door once.
I was so weak, I could hardly walk the length of the house, and it was very painful to even do so.
I just wanted to stay in bed, but the pain meds were not helping and it hurt to be there.
I suffered through the day.

And I thought, "This is it. This is the point where I have to start fighting again. Maybe I could have lived the way things were a few weeks ago, but this is ridiculous!"

So, in order to feel better by just doing something, anything, I faxed a note to my attorney, asking him to request an emergency authorization for the SPECT scan that my new neurosurgeon had ordered back in November. The attorney had told me on the phone that work comp would not make that decision and it would be left to the judge at the hearing that is scheduled for Feb. 8. I told him I did not want to wait 3 more weeks.

It just made me feel like I had done something proactive.

We all have a limit. Today, I felt I'd found mine.

The Way things are

2010-01-25T10:12:00.000-08:00

Another twenty days since I've posted.

My weakness seems to be increasing. I haven't gotten dressed out of jammies in two days and today's not looking too good either!

The reason is that I do some things in the house, light things, while I have any strength at all. When I am done those things, I have no strength to get dressed. I do try to keep clean, though, ha!

Doing the laundry, making the bed, folding and straightening and answering a few emails, it all adds up and my "spoons" are gone.

If you've never read the "spoon theory," I hope you do now. It really helps others to understand, I think, what people with neurological problems go through. Here is the link:
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

(I think I'll copy/paste it onto a post here, as well)

And I seem to have less and less spoons, lately.

Chronic pain continues. I deal daily with my pain medications. I am sure so many readers can relate to this! I am allotted by my PCP only 5-5mg oxycodone a day. He will not prescribe more for me. He wants me to go to pain managment, which I would be willing to do, but it is 77 miles away, one way.

This amount of medication is not taking care of the pain at all. I've tried adding in ibuprofen and acetomeniphen but they don't help central (spinal cord) pain at all. I guess I will have to succumb and make the trip to pain management, but really don't like the thought of that long trip once a month. Maybe with enough meds, it won't be that bad, and it will be worth it.

I have noticed that my goals and hope for the future have changed.

I'm sure this is due to this long journey I've been on for the last "almost" six years. Some of my readers have been with me since "day one!" They, most of all, know what I mean. It's been a long haul.

I do not believe I will ever be offered surgery to stabilize my head and neck. I have come to not expect a "fix" for this challenge I have.

This is what is known, in the "six stages of grief," as the last stage, that is, "acceptance." I accept what I have, it is what it is, and every day is going to be just about the same as the last, only maybe worse in terms of pain. It's NOT defeatism, and it's not "losing hope." It's more about being realistic, learning lessons, and a sense deep inside of me.

Perhaps this is when I finally "let go and let God." Or maybe, God doesn't have a cure in mind for me. There are so many people we all know who do not get the cures, do not get the fixes, and die with the hand they were dealt. When our faith is strong, we accept things and know that they happen for the glory of God.

"How can that be?" I can hear an unbeliever thinking. "How can suffering be a good thing?"

Someone with a deep understanding of God and Jesus and things eternal knows that the main thing of importance on this earth and in Heaven is that "all should come to know Jesus Christ in a personal saving way." That all should come to Him who will.

And most people come to Him by observing the living testimony of His children.

Thus, someone suffering in pain or other disabilities, if they do so in grace, God's grace, and they give the glory to Him, the unbeliever sees that, day in and day out, year in and year out, and thus their heart tells them, "God is in [that person], of a truth!"

They see God as real, the Gospel as true, Jesus as the answer, because of how we live and show others. It's not a fake, "show" thing...it's not a performance...it's a truth-thing. If it's real.

It's not something we can cause. It's something bestowed.

An experience I had back in the mid-90's now comes to mind. Driving over a mountain pass alone, one that was snowy and icy and had several, dangerous switchbacks, I carefully watched the road and kept a steady pace.

Near the top of the pass, I noticed a pair of tire tracks that ran off the steep edge beside the road, through the snow bank caused by the snow-plows the night before. No guardrails. Just off into thin air. The slope on the other side so steep, I could not see the bottom or the car below.

I slowed carefully and pulled off the side of the road where it was safe to do so. I set the parking brake and got out of the car, walking to the edge and peering over, afraid of what I'd see.

The terrain was almost completely vertical. At the bottom, perhaps 150 ft. below, was an older, Chevy Blazer. I feared anyone in that car HAD to be dead.

Some men had also pulled over by this time, and were out of their pickups. One of them found a long rope behind his truck seat, and tied it off to the base of a pine, using it to steady himself so that he could get down to where the car was. That is how steep the hill was, one could not simply walk down there.

The Blazer was so damaged by the many rolls it had taken that its doors were battered and would not open. The rescuer below had to kick in the windshield to get the occupants out. But, amazingly, they were all alive and were able to use that rope and other men pushing and pulling them to get up to the top where I stood.

"They" were a set of grandparents, elderly folks, with a 3 year old grandson. The shaky old man also was on oxygen and carried his oxy bottle, the tube feeding precious life into his nose, as he crawled up the hill.

I took the boy into my Izuzu Rodeo and put bandaids from my emergency kit onto his many little cuts, and basically soothed him and held him because he was very shook up. Soon, an ambulance showed up. The grandparents asked me to call the mother of the little boy to let her know that they would all be at the hospital. I did so.

When she answered the phone, I told her first, "You don't know me. And first thing I want you to know is that everyone is alright! Everyone is really fine. But, an accident has occurred up on Seven Devils at Loup Loup Pass. The ambulance is taking your parents and your son to the hospital in Okanogan. You need to meet them there."

The fearful, little boy didn't want to leave me, I had become something of an anchor in his storm. He reached out to me and cried as the EMTs took him into the ambulance, and my heart broke. I offered to ride in there with him, but they told me that would be against the rules. I'm sure he was in good hands and everything worked out fine.

I tell this story because it changed something in me, something I think about every time I get into a car.

How did these people survive? They said the Blazer rolled three times going down that hill before it was stopped by a tree. Yet, although they were weak, sick, elderly, very young, battered and bruised, they were able to crawl up a rocky, steep cliff-face to safety, in the snow, one of them carrying an oxy bottle!

They had each been kled in safely in their seat belts!

This was back in about 1995, and I was not yet one of those who was wearing a seat belt every time I got into the car. In fact, I never wore one. We were working on a ranch, as ever, and ranchers and cowboys just didn't use seat belts then. We had to get out and open barbed wire gates too often.

But this spectacle, the one where the Blazer went off the cliff, it changed all of that for me. I began buckling up every single time I got into a vehicle and, of course, have remained that way ever since.

You see, the fact that these people survived in good condition BECAUSE they had been wearing seat belts made more of an impact on me than if they had all died because they had NOT been wearing them. Do you know what I mean? I believe this all made a much stronger statement, than if I had found them all dead and the reports came out that none of them had been buckled up. Yes, the police might have said that the family would have probably survived IF they'd been in their seat belts, but that would have just been a big "IF" to me. But, to see them in such good shape after a wreck that I would have thought no one could have survived, it simply had to be attributed to God and those seat belts!

Anyway, it made an impression on me.

And I can use this story as a metaphor for what I was trying to say far above. God can use us to speak to people and cause them to do something to save their lives for eternity, if we allow Him to do so. It's not something we can fake. It is something that comes from God and lasts for ever and ever, never failing. And people who observe us can see this in our lives. And they know that He, our precious "Seat Belt," is the reason we survive with grace no matter what the world throws at us.

Maybe I won't have strength to get dressed again today. But that's okay. He gave me strength enough to write this so that you can read it. And that's good enough.

PS, having written all that I have, especially at the beginning of this missive, I want to also add something very important.

I may be in the midst of this constant pain, I may be getting weaker, I may have lost sight of any sort of surgical fix, but I want you all to know that I AM very happy. I am happy in Him, in my humble home and spot in this world, and in my partner and husband of 36 years. God has blessed me far beyond my dreams, and there is much each day that makes me smile. How I thank Him for it! God bless each of you!

Testing still on hold

2010-01-05T19:52:00.000-08:00

Just a note in case some faithful readers are wondering about my SPECT scan and new lumbar MRI.

I am still awaiting work comp authorization. The order from the doctor is dated Nov. 20, 2009. Such a long wait. I still think this SPECT scan could be very helpful.

Over the river...

2010-01-05T19:41:00.001-08:00

I crossed over the big bridge at The Dalles, OR yesterday, noticing the dam seemed to be shut, allowing the level of the river below the dam to be lower than usual and the rocks showing where they usually are not. Several rickety fishing platforms built by local Indians are situated below the dam, and a few old sheds with signs of "dried salmon" for sale adorn the roadsides.

I went to see my oncologist, Dr. Fu. He is my favorite doctor.

As I've mentioned before here, I have something called MGUS. Doctors call it like this: M...Gus (like the cowboy in Lonesome Dove). It stands for Monoclonal Gammopathy of Undetermined Significance. This means it doesn't have any significance if it never evolves into Mulitple Myeloma. A very serious bone cancer. But, I guess if it does evolve, then it IS considered significant, huh?

I am in a pattern of being monitored twice a year. Once a year, I have all the blood labwork, which is what I had recently. Then, six months later, I do a 24-hour urine test. And both times, I have a consult with the fabulous Dr. Fu.

It occurred to me yesterday that perhaps this MGUS stuff is more important than I'd been giving it credit it for, focusing as I have been on my broken neck and cranial settling etc. I mean, if I am to be tested twice a year for the rest of my life, this is "something." But, knowing I'm being tested that often gives me great faith that if this were to ever evolve to MM (which I have a 25% chance, statistically, that it will), we'd catch it early on and treatment would be very effective. AND, I have Dr. Fu. He'll take care of me.

I figured my appointment would only last five minutes. That he'd say the tests look fine, how are you, goodbye. But we visited for 45 minutes. He told me that the bloodwork looked fine, and he did not have the actual MGUS test back yet, and that if there was anything of concern when it does come back, he will call me. I know he will. I know he won't forget me. He's a very good doctor.

He opened the door and about rushed across the little examining room to give me a hug. And most of the time, we talked about my neck and surgery and he advised me to try to live without surgery as long as I could. He didn't seem very positive about good results from a surgery.

When it was time to leave, he hugged me again. Reminded me to take my walking stick with me, which I was almost forgetting, and I teased him, knowing he collects walking sticks, telling him I have to watch him closely or he'll steal it.

As we walked down the hallway and I was leaving, he said, "You are now past the point of making things happen. You are now at the point where you are making something good of what is."

I liked his observation.

I also do not have the strength anymore to "make things happen."

The Alone Zone

2010-01-05T19:20:00.000-08:00

Sometimes, I think I have changed a lot, but then I look at things around me and realize that I might be a lot the same and my days and surroundings all still reflect the me I used to be.

The me I used to be.

One thing I pondered recently is that my house satisfies the artist in me.

The artist in me.

I used to write and perform and train horses and play music and do many creative things. Now, most of those things are gone. But the Lord has given me a house that serves as a blank canvas. How I enjoy doing little things in this place where I spend so many days and hours, day after day, within its walls.

I remember how, when I was healthy, there was not a single day that I did not go outside, take care of the horses in the barn, and other animals. Now, I can go days without stepping outside. And a week can go by without leaving the yard.

This house, a manufactured home, was all white walls and white trim and white doors and ceilings when we moved in. Over the last three years, we have been doing little by little to change some of this. As I've mentioned before, we are "going for" a lodge-type feel to our house. Not a big fancy resort lodge, but a small, lakeside camp would better describe our taste. We have some mounted deer antlers on the walls, artwork that reflects mountains and lakes and trees, all which work well with our horsey/cowboy art that we have collected over our lifetime of working on western ranches.

I have been painting the doors and it's been very fulfilling. To me, each door is a work of art. They are a poly-type material with four recessed panels in each door, each side, and a nice wood-grain throughout. I paint the doors and panels until they look antiqued and aged then I step back and feel like I've just created a piece of art on a canvas. It's very rewarding.

And I'm alone as I paint. I'm in my "Alone Zone." Mouth closed, concentration on the colors and avoiding places I don't want to paint, I know this is a good place for a brain to be.

I've always known that a brain needs those times when we just "zone out" and don't think much, just live in that very moment. It's restful and cleansing for the brain. Riding horseback down long trails or brushing horses in the corral, I had hours each day of my life in this sort of activity. Cleaning corrals with manure fork and wheelbarrow; working in an arena to create the balanced trot I was "feeling for;" gardening and much more, pretty much all of my work life has been spent in the Alone Zone. I've loved every minute of it.

My progress is exceedingly slow. It takes me a couple of weeks to finish both sides of one door. I can only work on them for about an hour or two a day, but then I can't do it every day because I pay the price bigtime for doing it. But it's my choice to do it and I'll do it if I want!

I counted 14 doors, inside, in our house, including closets. I have painted, so far, one side of 5 different doors. It has taken me almost 3 years. I can easily see many years ahead that there is plenty of resting-brainwork for me to do here. I don't mind.

I have been feeling pretty badly lately, even though my days are very slow going and I get times of rest and napping each day. My oncologist asked me yesterday if I could see obvious decline, neurologically, and I said absolutely yes. Just walking a block looks monumental to me lately.

I have many, many thoughts to blog about, but being at the computer has become harder and harder. I had my narrow mind focused on the reason as being only my head position while looking at the monitor. Then, it dawned on me yesterday that it's not that as much as it is the movement of my arms and fingers at the keyboard. As you, dear reader, type, you might take notice of how much arm movement is going on. I'm pretty docile as I type, but I can see my elbows and arms flying about, and I know that it all travels right up my arms right to my skull base. Voila!

So, yes, I'm still horribly far behind on emails. I'm getting used to it and not letting it bother me so much any more.

What if?

2009-12-16T10:57:00.000-08:00

It was 13 years ago today that I got the unexpected phone call that my father had died.

The way I heard it, he and his wife went out to Friendly's for lunch, Dad had a big steak, and when they left and got into the car to drive home, Dad suffered a heart attack.

I live 3000 miles away so I didn't hear about it all until he had passed. He was 80 years old, and we had just celebrated that date in November. His birthday was actually Dec. 10, but ,because of New Hampshire winters, my stepmother decided to have his party early in order to avoid travel challenges. I'm so glad she did.

I'm so glad my Dad lived to be a good, long age.
I'm glad he did not have to go into a nursing home (not that I would have allowed that!) and suffer.
His spirit was so free, even though he walked with a walker after several debilitating strokes.
And I'm so glad that he accepted Jesus as his Savior years before, because now I know without a doubt that he's waiting there for me, to help me over.

A friend of mine passed away last Sunday from a brain tumor. Curly was an extraordinary man, like my Dad was. He was a strong family man, he lived a life of respect and honor, and he was incredibly gifted at songwriting and singing and playing the guitar. He took one of my poems and put amazing music to it, and then, together, we won an award for that collarboration.

I have a card I picked up to send to Curly's wife, and I chose it because of the unique and original thought expressed on the front of the card. In honor of Curly and my Dad today, I'm going to type it here:

What if the brilliant,
twinkling stars
that bring the dark night sky to life
are windows looking out of heaven?

and at the very moment
when we're wishing on those stars,
hoping that the loved ones we have lost are happy,
safe, and free...

maybe they are looking
at those same stars from the other side,
making the same wish for us...
sending us all their love.
Sharon Valleau

Though they did not know each other "down here," in my mind Dad and Curly are together now, strumming guitars, Dad listening to Curly and loving his deep, rich voice, his poetry in his lyrics. Every once in a while, they have to put the instruments down and go welcome one of their friends and family into Heaven. It's the way things are done up there, I've heard.

Welcome home, thou good and faithful servant.

The Christmas Guitar

2009-12-11T20:50:00.000-08:00

I grew up many years living alone in the little house on Bog Road with just my Dad. My parents divorced when I was 8, and eventually, my older sister moved into Mom's house, while I stayed with Dad. This created a close relationship between Dad and I that was a treasure to me.

Dad played guitar. He had an old, F-hole guitar of some kind. I used to know the brand but I have forgotten it. He sang and played songs like "Hey, Mr. Banjo," and "The Wabash Cannonball." Dad loved listening to down-home music, and his cousins often got together and jammed on guitars, stand-up bass, fiddle, accordion and banjo.

I wanted a guitar almost as much as I dreamed for a horse growing up. But we were poor, and getting a guitar seemed much more likely than getting a horse. Dad promised me that I'd get a horse, "when his ship came in." But we lived quite a long ways from the ocean.

With parents living in different houses about 30 minutes apart, I usually spent the weekends with my Mom and her husband and their kids. Dad would drive me up there and let me off on Friday night and then pick me up on Sunday. All weekend, I'd pray for there to be a horse out in the little shed when I got home.

Though I really didn't understand the Gospel, I had faith even then, and I knew God could make a horse appear out there if He wanted to. If I asked hard enough. So, as soon as we drove into the driveway, away I'd run out to the shed to see if there was a horse tied up in there for me.

There never was, but that is another story, of how I got a job at 15 and bought my first horse, a 3 year-old, wild Buckskin gelding named Buckshot, with my saved paychecks from waitressing.

One Christmas rolled around and Dad knew I wanted a guitar. That must have seemed a much more achievable gift to him than a horse.

I was up at my mother's house and on Christmas, after lunch, the phone rang. Mom said it was Dad...for me.

I took the phone and Dad said, "Do you know what this is?"

And he strummed a chord down the strings of a guitar.

I said, "No...what is it?"

"It's your guitar," he said, his sly smile evident in his voice.

"Come get me now!!!" I demanded.

He did, and as we drove again into the driveway, I piled out of the old Hudson and ran into the house. We never locked the doors in those days so there was no reason to stop and get the old skeleton key out from under the garage eaves and unlock the door.

I opened the door and looked behind it, at the Christmas tree. No guitar or large, wrapped, guitar-shaped box! So, I ran from the living room into my bedroom, but no guitar.

"Where is it?" I shouted to Dad, who'd come into the house behind me. Our little house, he built it in 1947, one room at a time. It was very tiny, but full of our love.

He laughed out loud and said, "Right here, silly!"

I went back into the living room and there it was, lying on the couch. A brand new Silvertone guitar he'd bought for $20 at Sears. That was one-third of his paycheck. He'd tuned it all up for me, had probably played with it all weekend!

It was a black guitar with a sunburst design, a reddish-golden glow that burst out from around the sound hole. And it was the best thing I ever saw.

Over the next few days, he taught me the three chords in the key of G.

I didn't have a guitar case, but I had the cardboard box the instrument had come in, and it had fold-out, cardboard handles. When summer came, I would pedal my bike the 4 miles or so up to my best-friend, Barb's house, somehow hanging onto those cardboard handles and riding up a very steep hill past the granite First Congregational Church, up Hutchins Street.

Barb and I would spend whole days pretending we were the Beatles and now I had the guitar to add to the authenticity of our imagination. Over and over, along with our other friend, Gretchen, we'd sing "She Loves You, Yah, Yah, Yah," and "I Want to Hold Your Haaannnnd!"

Years later, I sold that guitar to my brother, Larry. I wish I still had it.

Many years after that, after moving out West, getting married and working on ranches, I picked up music again, playing guitar and mandolin and banjo. My Dad got to see some of that, and just now, while writing this, I am remembering a wonderful spiritual connection between my Dad, his guitar and me. And God.

It was in the 1980's, I was in my 30's. I had several years before (in 1978) learned about Jesus, the reason He came to earth to be born in a manger. Once I understood God's perfect plan of salvation, I accepted Him into my life, I dedicated my life to Jesus, and became what the Bible calls, "saved."

I always tried to tell my Dad about Jesus. It was important to me that he be in heaven with me. And I do believe that only by Jesus are we allowed to enter Heaven's gates and God's presence.

I believe that because that is what the Bible states very clearly. But he had never really listened or had a heart open to it.

Back in NH to visit my Dad and Mom (in separate houses!), one night I was sitting on my Dad's bed, and I picked up his old, F-hole guitar. It was in tune, like it always was. I quietly strummed and sang, "Amazing Grace."

"Amazing Grace, how sweet the sound...that saved a wretch like me.
I once was lost but now I'm found...was blind but now I see."

Dad came in and asked me, "Can you tell me what that song means?"

Dad was about 70 then. I'd told him many, many times the way to salvation through belief in Jesus in the previous 7 or 8 years. I was jaded. I didn't see then that a mighty spiritual moment was about to happen.

I put the guitar down gently on the frayed, chemise bedspread, and led the way for my Dad to follow me into his tiny living room. I sat on the same couch that had lovingly cradled my first guitar back when I was a kid. And I told him what I call the "Reader's Digest" version of salvation.

I told him that sin stood between us and God. That God can only be surrounded by good and that only good can enter heaven, or commune with God. But humans (us) are not without sin. All of us sin and "come short of the glory of God."

So, God had to create a way for us, His children, to be saved, to come to Him. He sent His Son, Jesus, on Christmas morn, to be born in that manger. The child fulfilled all the prophecies in the ancient scriptures. He came to be "The Way, the Truth and the Life." Jesus grew up to say those words, and added, "No man cometh to the Father but by me."

I told Dad that the Bible shows us that we need to believe with all of our hearts in Jesus. That He is real, that He is God, that He came to save mankind. That baby that is so cute on Christmas cards had to be born in order to die a bloody, ravaged death, the death we deserve because of our sin. Jesus did that so we can be forgiven of our sins and can then have our place with God in Heaven, at His throne.

I asked Dad point-blank, "Have you ever done that, Dad? Have you ever given your heart wholly to Jesus?"

He said (I will always remember these words precisely!), "Who, me? No, I haven't."

I then asked him simply, "Would you like me to help you do that now?"

And he whispered, "I'm ready for it."

This wise, wonderful father of mine, the man I loved like life itself, who gave so much to me and for me, who sacrificed to raise me, who gave me unconditional love no matter what bad deed I might do...this bald, bespectacled man knelt down with me in his living room and we held hands, and as I prayed the "sinner's prayer," he repeated after me.

That night, Jesus came to live in my Dad's heart. He forgave Dad of all his sins, even the times he knew to do good and didn't do it. He performed a work in Dad's heart. And gave me assurance that when it's time for me to go, my dear Dad is right there waiting for me "on the other side."

What a glorious thing to know!

So it is that the Christmas guitar ties in with the real story of Christmas. That God used that connection He'd made between Dad and I, and even used the same house that I grew up in, though our spiritual experience together happened at least 30 years after the gift of the guitar.

Jesus was born for us. He died for us.
Jesus lived for us. He became the sacrifice for our misdeeds.
His life is the key to the door that opens to God.
There is only one Key, and it is not hidden under the eaves somewhere.
The Key is right out in the open, easy to find and accessible for everyone.

Merry Christmas, all of my dear friends.

Days of Apathy

2009-12-11T20:28:00.000-08:00

I have decided...

I don't care.

I don't care anymore what a neurosurgeon thinks. I've seen six now, and they all come up with something different. Some brush me off as a pain in the backside, i.e. "I've never seen anyone like you, with your complaints, after a Jefferson Fracture."

The first neurosurgeon, the one I saw when I was brought into the ER 5.5 years ago, said later on, "You've healed straight and fine. Your neck is straight and fine."

The second neurosurgeon told me, "You're lucky to be alive. Get off the internet and get on with your life."

The third neurosurgeon found that my neck (C1) is still broken, is non-union. He told me that all my ligaments must have ripped and been broken when I broke my neck. He told me he could help me. One surgery and three years later, he told me there was nothing he could do for me, without having done a single thing to my skull base/upper C spine.

The fourth neurosurgeon was the one who yelled at me and told me that he'd never seen a patient come back to him after suffering a Jefferson Fracture and have the complaints that I have. He told me he wouldn't do anything for me and wouldn't take someone like me as a patient because he had never seen anyone like me.

The fifth neurosurgeon talked to me for 20 minutes, told me he would not take care of me if I had a surgery out of state and needed emergent help, and called up the referring doctor (the hematologist who sent me to him) and complained to him about sending me there and wasting his time.

The sixth neurosurgeon is the one I am seeing now. He's probably a good guy. He might have some good observations. But I'm past caring.

I got a copy of the report he sent my primary after seeing me. I read it, saw things he got wrong, saw new things, like the fact that in my NY imaging, he had not seen any slippage in the joints between C1 and C2 when I held my head in flexion during the xray. But, then he did see some slippage in the xrays he had done, in the same position, last month after I saw him for the first time.

This would explain a lot, when I think of how I already have been diagnosed with spinal stenosis in that area (narrowing inside the spine where the cord runs), and if a bone (C1) is slipping forward when I bend my chin toward my chest (look down), I can "see" how that narrows the area for the cord even more and likely compresses the cord. But then...neurosurgeon #3 said I had no brainstem compression from the C1.

Oh, I forgot Neurosurgeon #3a, as he operated on me with NSG #3, and he was the one who diagnosed me with having also suffered dislocation of the occipital condyles and said I had "a chiari, but not Chiari Malformation." I understood what he meant. This NSG is actually #7, then. And he has seen thousands of cases of Chiari. He is one of the leading experts on Chiari in the world. If he said I have "low lying tonsils of the cerebellum" ie "a chiari," then I believe him.

NSG #6 doesn't like NSGs #3 and #3a (aka #7), so he wrote out a special paragraph in the report saying I do not have Chiari Malformation, which I already knew. But NSG#6 didn't let me speak too much to explain such things to him. I didn't have a chance to tell him I have dural ectasias in the lumbar area, too. I mean, I told him, but he talked over the top of me, so I know he didn't hear it.

Sigh...

All of this suddenly has tired me out, and I've become apathetic about it. I don't care. I've stopped hoping for a surgery to fix me. I'm at a place where it is what it is.

This attitude might all be temporary, but that's how I've been feeling lately.

And it's quite a freeing sensation. To not put so much hope into a man (NSG). To not have any expectations.

Maybe it's about time. But it's bittersweet...saying goodbye to hope.

Keeping one foot in front of the other...and me and Sarah Palin.

2009-12-01T11:31:00.001-08:00

One day progresses into the next, but the seasons outside my window show me that time is moving along regardless of my own perceptions. The rusty-colored leaves of the oaks are mostly gone and I love the opening up of the view from the front of our house. Now, I can see the hills, clad is shades of blue and green and gray, a couple of miles across the valley from us. These are called The Horse Heaven Hills, and at night, I can now enjoy the twinkling lights from the homes there, while before twilight, the westward-facing windows of those same homes reflect the brilliance of each orange or rosy-hued sunset.

Our neighbor just brought us a cord of firewood. We like supporting our neighbors in their labors of supplementing their own disability incomes. We know how much hard work it takes to go up into the mountains and cut and gather blocks of wood, split it up, bring it home and sell it, all to earn a meager amount for the amount of work involved. We did it for many years.

Medically, tomorrow is the appointment for my SPECT scan and the new lumbar MRI. However, I'm waiting for the authorization of these tests from my workers comp insurance company. If this is not forthcoming today, I will cancel the trip to Portland for tomorrow, reschedule perhaps for next week. God has a plan. I am actually looking forward to the SPECT scan with hopes it will reveal some things that no one else has been able to see.

I've been mostly staying in the house. I "think" about stepping outside, at least for some fresh air or to check on what my husband has going in his shop, but the thought of the walking and how it affects me keeps me inside. It's been a mixed-bag of weather, sunny for a few hours in the afternoons, most mornings start off cold, frosty, some fog, and some high clouds. Our weather is greatly affected by the ebb and flow of wind and water off the nearby, mighty Columbia.

On Saturday, we did drive to our shopping town over in Oregon, and I realised that was my first time out in a week.

My appetite is noticeably lessening, to me, actually a good thing. I need to lose weight and not doing much, it's hard to lose even an ounce. But with my swallowing issues now, the thought of food stuck in my throat for hours keeps me from wanting to eat much. I think I've lost a little.

Lastly, I've been reading Sarah Palin's new book, "Going Rogue."

I've always been a fan of this strong woman who had an obvious heart for serving our country. Yet, with her book, I've kept an instinctive, open mind. I didn't want to read it like a fan letter to herself. I didn't want to hear whining about treatment behind the scenes of the VP campaigns. I wanted to see the "stuff" she was made of.

She writes, obviously, without a co-author. In the first half of her book, her writing seems simplistic, colloquial and down-home. With folksy statements including phrases like "we kicked butt" and "we beat feet down to the courthouse," I wasn't sure how she would come across to the rest of the country. I mean, I love that type of talking, I talk that way too. But...I was expecting something that I thought was more academic from a person I voted for and expect to follow in the future.

I grew to love her talking style which was reflected in her writing. It "fit" me like a glove. Yet, I was also impressed when, halfway through the book, as Sarah began to write about her Governorship in Alaska, there wasn't any more of that folksy kind of communication. Subtly, Sarah got down to the business of what governing is about, serving the constituents, making things better even when tough choices must be made.

Reading her way of dealing with corrupt government and "Big Oil" has been inspiring and informative. I came away from the read with a huge respect for this woman and her family. And I consider the reported 9 or 10 investigators who have been hired to go over the facts in her book with the fine-tooth-comb. I know they want to earn their wages and come up with fabrications and fairy tales within her pages, but the book has been out a few weeks now and no one has come forth yet with any such allegations. I mean, she names names in this book in a way I, as an author, never would do. I admire her!

What they have been through, the judgments that have befallen Sarah Palin that would never have been put upon others, it all adds up to a good read. She is not whining in any sense of the word. Like me, she grew up working with men, and there is little compassion for whiners in that environment. She's just stating the facts, briefly, and then moving on.

I can understand now why she wanted to write this book, to tell "her side" of it all. I'm glad she has. I thought I liked her before. After reading this great book, I'm one of her biggest fans. One thing I've noted: during the VP campaign and even now, she doesn't have a chance to come across as intelligent as she truly is. She is not someone who really talks in sound bites. She needs time to explain her position, which I've learned from the read is basically that of Ronald Reagan, a political view she's held since high school.

I also have wondered if the interviewers, even those conservative ones, had read her book before interviewing her. There are so many fascinating questions I'd have asked her if I had the chance! The main thing is, this is a brilliant woman with good, common sense born of being raised on the Last Frontier and working at the physically-demanding jobs of Bristol Bay fishing, gutting fish at cannery plants, waitressing, putting herself through college earning her tuition herself. Her life has been one of hard knocks and she is a first-class survivor,handling each scenario with grace and aplomb.

One other thing: she has achieved and served in several ways I simply was not aware of and was not brought out in the VP campaign. For example, she held the office of President of the Alaska Mayors association when she was Wasilla mayor. And she also worked for the Governor of Alaska, before her terms in that office, as a liason with the big oil companies. This takes a tough and battle-hardened person of any gender, to stand up among these big moneyed corporations. After the assumption of the Governor's office, she caused changes throughout Alaska by causing more oil development and also initiating a watershed project of bringing natural gas to the lower 48.

Anyway....I'll get down off my soapbox now. Whether she runs for president some day or not, her book is definitely eye-opening.

Herd of elk

2009-11-23T22:36:00.000-08:00

Yesterday, we took a drive up to a very small, mountain town. I love eating lunch at the restaurant there, it's a locals' type place and, as I listen to the old-timers sitting around the wood fire talking about the "wind last night" and the blown down trees, I am comfortingly reminded of times during childhood, listening to my Dad as he visited with the "old folks." The squeak of rocking chairs, long pauses between spoken thoughts, the ticking of the mantle clock, a deep-drawn sigh from an old hound dog lying on the twin bed that served as a couch, his head nestled on Uncle Amos' lap.

We'd had a light snow the night before. How exciting for me to notice a herd of cow elk grouped in a circle out in a white hay field. These are wild elk, not held in by fences. I snapped a few pictures, and later asked an old timer about the elk. He said that there are about 400 that winter in the valley.

Catching up...

2009-11-21T18:18:00.000-08:00

I'd thought perhaps the little yearling who rests on the hill behind our house and which can be seen out my guest room window (where I spend much of each day) was the same deer that was struck and killed by a truck down by our mailbox on the road. But yesterday, she was back. So good to see her munching acorns again up under the naked oaks.

I went to see my new neurosurgeon (NSG) on Wednesday. I have been feeling the worst I've felt in a long time, apparently due to the trip to California a couple of weeks ago to see our son. The pain and weakness is so consuming and the oxycodone doesn't always touch it. All I can do is lie in bed and listen to the radio and sleep. Even reading a book, now, seems too much physical work.

Wednesday, the new doctor visit was very emotional for me. It seems at times that NSGs do not always have the best, bedside manner. This one was not the worst I've seen, but to me, it seemed he was brusque, he interrupted me and didn't seem to listen too well or to care a whole lot. I became very emotional with lots of tears running down my cheeks and my nose running. I could not help it!

I wanted to be stoic and strong and speak with him on some semblance of the same intellectual level, but all I could do was sob. This seems to be a long term effect from the post-concussion syndrome I have. I hate it. I am so out of control and I know people are looking at me and making judgments but there is nothing I can do about it.

"New NSG" said that there was nothing surgically he could do for me. I did feel very brushed off, because I know it will take longer than 45 minutes (the time I spent with him) to figure this out. I thought he was giving up on me already, and since I've experienced that a few times already, I reacted as I did.

In the end, the NSG said he'd have his colleagues also look at my imaging. He sent me downstairs for a set of cervical flexion and extension xrays and I am set up for a follow up appointment for Dec. 9.

On Thursday, I was back to feeling so badly, I couldn't move from bed. I just can't describe this pain, wish I could have to the doctor.

On Friday, I tried not drinking coffee, thinking perhaps the caffeine was affecting intracranial pressure and I, in fact, did feel better yesterday. But today, it all came sweeping back again.

Yesterday, the NSG's office called and said he wanted me to be set up for a new lumbar MRI and a "SPECT" scan of the Cspine. I've set those up for Dec. 2, again at OHSU in Portland. I never had heard of a SPECT scan so I looked that up. It's a form of nuclear testing where the patient is injected with some form of chemical and in two and a half hours, an MRI is done. It is supposed to afford a deeper look at things, and I am so hopeful that it does.

Of course, this made me feel much better about new NSG. If I could only have a doctor who WOULD look deeper and would take me on and try to figure out the source of these problems and pain, oh what a gift that would be!

The way the mind works...

2009-11-16T19:19:00.001-08:00

The way my mind, challenged by constant, chronic central pain, works is this:

For most of the time, I hurt in such a deep way, it's nothing I can push past or ignore or even put a nice face on.

But, sometimes, the meds kick in just right and I get a few moments of "no pain." Like today.

I've sure been suffering since getting home from California. I'm not sure I can ever make that trip again. But, this afternoon, my pain meds seemed to be working for about 15 minutes.

When they did, my mind filled with things I'd like to do around the house, but I know enough not to start anything. I know this is a small window of opportunity and I don't want to drag out a bunch of stuff only to feel too poorly to put it all away.

I happened to remember a business I saw advertised down in central Oregon called "Cowgirl Cash." This woman bought and sold used cowboy boots and clothes and such. I remembered all the incredibly beautiful cowgirl shirts hanging in my closet...the ones I used to wear on stage back when I performed cowboy poetry around the West. I thought of the money I could raise selling these colorful, embroidered shirts.

I then looked into the closet and reasoned that I ought to try on the shirts to see if they fit me in any sense. Perhaps I'd wear them again somewhere, if so.

I started trying on shirts and was so happy to see that they all did fit, though some were sure tighter than I'd have liked. If I were to lose a few pounds...and if I were to have surgery one day and were to see improvement, maybe...well, maybe I would dare to think about returning to the stage again. You see, my level of pain was masked enough to allow those fleeting thoughts to cross my mind. Returning to the stage is something I never allow myself to think about, but today, I did.

But only for a few minutes. Then, the deeply seated physical pain came back and the incredible weakness, and it wasn't hard for me to lay that idea aside.

But, I'm still hanging onto the shirts.

For now.

While I was in California, I constantly thought about visiting the ranch where we'd lived and where my old horse, Shadow, still abides. He'd be 18 now. And I was only 13miles away.

But, I also imagined how bad I'd hurt (physically) IF the sight of my old friend caused me to cry really hard. Since that was not hard to imagine happening, I did not allow myself to entertain the idea of going to see him.

As if to affirm my reasoning, while I was there I received an email from the owners of the ranch, and who now own Shadow. They did not know I was in CA that weekend, and had sent me several pictures of him and his owner, with notes about the training they are doing together. Those wounds are somewhat fresh yet. What a silly child I can be, unable to get over this grief of losing horses, and that one Paint horse in particular.

Wednesday this week, I go see the new NSG. I guess I mentioned this yesterday. I do have hopes that this doctor will be able to help me, even if he IS the 6th NSG I have seen.

Some words rolled off my tongue this evening as I spoke to my husband, words I had not said before. I told him of my hopes to become "better" due to something (anything) this neurosurgeon has to offer, because, "It's not going to get better on its own. I know that now. It's been 5 and a half years. Things are simply not going to get better unless something is done."

Today, I had another "autonomic dysreflexia" event. They come every day. I think what prompted this one was the fact that I was wearing sweat pants. All day, I suffered through up-and-down temperature changes. I was either chilled or sweaty all day, putting on a jacket inside the house, or peeling it off in a rush.

I think it was during one of the "over-heated" times that I felt that burning crawl up the back of my neck, the burning "scalp crawl" that seems to set my head on fire, especially over my ears and on the back of the head. The skin on my head felt tight, and I was awash in that familiar weakness and I simply could not stand any clothing on.

By the time I'd peeled off the hot clothing and put on a tank top and shorts and turned on the fan in the office and gotten the BP monitor out of the closet and turned it on and got the cuff on, pumped up the cuff, etc, the reading was down to 130/109. I know it had to have been higher before I took the reading and was on its way back down.

Today, as every day, the swallowing is a tough issue. It is all getting worse. I'm praying for help, an SOS sent from a lonely island.

Yet, as I write this, I am so blessed because my frame of mind is good. I know my blessings, and I know they are so many. I do have an inner peace and happiness and am so thankful that I am not also battling depression.

However, at the same time I write this, I also must be truthful and say that at the times when the pain is the worst, at those times I do hope for the relief and release of death. I'm ready to go. I will not cause it to happen. That is all up to God. Oh, what joy to not fear death. To not be controlled in any way by a fear like that. Definitely, there were times in my life when I did own that fear. But not anymore. And that is a big, big gift in itself.

What an oxymoron I am! What a spiritual conundrum! How can one hurt so much that she wishes for death, yet still be able to say with all honesty and openness that she is not depressed and loves her life? I honestly did not have any comprehension that something like that is possible, never before in my life. But I do now.

and I speak of it here so that you can understand for yourself about loved ones you may know who are the same way...or perhaps yourself. I take no credit for it, it's just a frame of mind and a way of LIFE that came to me NOT of my doing, it's a gift given from God and perhaps that is what is meant when He said, "yea, though I walk through the valley of the shadow of death, I fear no evil, for thou art with me."

when you have your feet planted on the firm foundation of Jesus and you know what comes after this life, it kinda does some neat stuff in your mind and psyche. It all might not make sense to the human-ness of the world, but it makes perfect sense in a Godly way.

Pardon me for working through this as I write. I think I've figured it all out.

It all seems sort of confusing, yet now I've centered on what it is. The Spirit of God through Jesus has long ago been my companion. So, my days are filled with Him and all that He has taught me over these last 30 years.

Momentarily, when during the course of a day I am overcome with a pain so central and deep that I am consumed, I do not curse Him, but I give myself to Him. I yield to the promise of His Gift, the promise He will never leave me, nor forsake me.

How do earthly words describe spiritual, heavenly things? There are these things we cannot understand nor comprehend until we walk down that path. How do you describe the feeling of love, the sensation of love that you have for another human being? Is it even possible, even though the poets have struggled since time began to do so? Better lyricists than I have tried to capture the essence of His Spirit, His Peace.

So, I hope you can "see" what I am trying to write. That, in spite of physical pain or so many stories of grieving, still the sunshine of God's Love makes so many moments in my days beautiful.

It may not make much sense, but it is the way the mind works.

just a quick note

2009-11-13T21:37:00.001-08:00

I know I should write more. I will soon, I hope.

I was gone for a week, we drove south to visit our son. I wasn't able to see any of my old friends down there, a few of whom read this blog. We were only there 3 days and I felt my strength wan and decrease as each hour went on. I had to ask that we go home sooner than I'd planned, just because of this. I didn't want my son to see me in really bad shape. So, we left early and I was so glad to get home. I spent all day today in bed in a lot of pain. It is so hard to describe how this affects every cell in my body. I can only lie in bed and pray for sleep. I feel better tonight, though, so will go to bed soon with prayers that tomorrow will be better.

I wanted to post about Lyrica. I am going to go off of it. I only got up to the "starting dosage" of 150 mg, but I started to experience some real problems in thinking. Perhaps the Lyrica, mixed with the Cymbalta I take plus the oxycodone, all add up together to give me problems with thinking...or maybe it shouldn't be given to someone with a brain injury. Whatever the situation, I'm going to wean myself off of it. I had a few times when I was awake and struggling with comprehension of where I was in the world. I don't need that!

I hope to post more soon, I have a lot I want to record and share. I am just praying for strength enough to do it. You've probably noticed that I sometimes post a lot. Those are the times I feel pretty good, and want to catch up with lots of thoughts.

Next Wednesday, I'll be in Portland, OR to see the new neurosurgeon at OHSU. I'm trying hard not to allow myself any expectations. But....those "hopes" still come!

thanks for reading!

Today's autonomic "event"...

2009-11-03T22:16:00.000-08:00

So, as I've written previously, I've been having a lot of symptoms lately that really tell me the compression on my brainstem is increasing.

And I've just discussed dysautonomia and autonomic dysreflexia.

Today, while making our bed, I felt a very deep cold inside the core of my body, while at the same time, I was sweating on my head, above the C1 level of injury. I was not exerting at all at the time...no breath-holding...nothing out of the ordinary.

I've always been a good one to ignore pain and such, and to press on. So, I naturally went ahead with some light vacuuming. Very light, with a very light vac.

I have these episodes quite a bit. In fact, I've recorded some of them here on this blog. So, I immediately recognized that I was having an "autonomic episode." I walked calmly into my office, where I keep my BP "machine" and, slipping on the cuff, I pumped the bulb and waited while the reading came down to the point where it was ready to give me the reading. My normal BP is 120/70.

The reading came up 144/84. I knew this showed that I was indeed having fluctuations in my autonomic system. There was nothing I had been doing that would cause someone without problems or imbalances in the autonomic system to have a spike in BP. As I said, I have these episodes all the time. I can recognize when the symptoms are occurring. A few months ago, while just beginning to make the bed, I felt the old, familiar feeling of my head sweating, pain above the ears, a tight scalp, pilo-erection (hair follicles on end), flushed face, painful scalp "crawl"...so I took my BP and it read at that time 184/152! And that was a couple of minutes after the worst of the symptoms while I set up the BP machine.

So, this reading did not cause me concern, as I'm used to this. But it continues to "prove" that this stuff is going on.

After taking this first reading today, I went back and finished the little bit of vacuuming I was doing (I told you, I'm bullheaded) and then came back in to the office, sat in a resting position, and re-took my BP. This time, it was 137/87, with a pulse of 101, as before. This made sense. Things were evening out.

I turned around to my computer monitor then and for five minutes, I answered a non-emotional email. Out of nowhere, however, I felt that painful scalp crawl, the piloerection, the tightness and pain above each ear. I turned back around to my desk and slipped on the BP cuff that was right there after taking my last reading.

It read 149/91! With a pulse of 94. I have a feeling it had to have been higher before I got hooked up and ready to go with the BP monitor.

Five minutes before, it was 137/87. Five minutes of very calm resting (the reduced pulse showed that)...then the feeling I know oh-so-well...the symptoms that tell me things are wacky in my brainstem, quite frankly. I'm sort of shocked to see my BP has jumped up, just like that...for no obvious reason.

Next, I rested a good 10 minutes of typing emails. And, again, just for a baseline, I took my BP. No further symptoms were happening now. And my BP showed it. In 10 minutes, my BP had dropped to 128/84 and my pulse was 85.

And 30 minutes later, I took it again (just to record that baseline...to also prove to myself the monitor was working correctly) and my BP was pretty normal for me, 127/87, pulse 85 like before.

This all would be bad enough if this were a rare experience, but it happens to me every day, several times throughout the day. It can be brought on by leaning over to fill the dishwasher, or too-tight waistband on a pair of jeans, or allowing myself to experience too much humor or happiness...or witnessing something that might cause me to feel some anxiety, tension or stress (a car crossing lanes in front of us, for instance). Just every-day, common things, like making the bed, can trigger it.

I have no idea how dangerous this is. I mean, for it to be happening this often, every day. There is no cure, all I can do is try to avoid the things that trigger it. Perhaps, if it is caused by my cerebellar tonsils pressing against my brainstem, if THAT was decompressed, maybe these episodes would end? How wonderful that would be!

Until then, I have learned to live with it by God's Grace. It is what it is.

Let's get on with living.

Dysautonomia

2009-11-03T13:23:00.000-08:00

I was diagnosed with dysautonomia in June, 2009. I was shown where my "acquired chiari" (cerebellar tonsils/herniation) is pressing against my brainstem. It was explained that if I do much activity or get too excited about things, it causes my blood pressure to rise, and that causes even more pressure inside of my head including the cerebral spinal fluid (CSF) and blood. That rise of fluid pressure inside my head causes tissue compression.

Here are some links regarding dysautonomia:

http://en.wikipedia.org/wiki/Dysautonomia
http://www.ndrf.org/ans.html
http://www.ninds.nih.gov/disorders/dysautonomia/dysautonomia.htm

Here is an excerpt from another website:

Dysautonomia
The autonomic nervous system is the "automatic" or "unconscious" nervous system. It controls and regulates virtually all of our body functions and systems, such as blood pressure, pulse, body temperature, breathing, sweating, bowel function and sleep patterns. The autonomic nervous system is made up of two parts: the sympathetic nervous system tends to increase and accelerate or speed up body functions, the parasympathetic nervous system tends to slow down, relax, and put the breaks on body functions. In a normal situation, the two divisions of the autonomic nervous system work together to control these functions in a continuous manner reacting normally to stimulus.

When the autonomic nervous system becomes "out of balance," it is similar to a car that needs a tune-up. When this occurs, these body functions may either speed up or slow down at inappropriate times with a very noticeable effect on the person. This may occur for no apparent reason. You may be sitting quietly at home reading or watching television, driving down the highway or shopping for groceries in a store. The autonomic nervous system suddenly decides to send out a burst of signals to speed up all body processes. When this occurs the symptoms may be extremely severe and frightening. This faulty regulation of the autonomic system is referred to as "dysautonomia." It may also occur as a response to stress whether it be emotional or physical. Such things as a severe illness, job stress, family problems, buying or building a house, a move cross country, going off to college, having a child and similar type occurrences in our life may trigger the autonomic system to react inappropriately. While these symptoms are extremely frightening, frustrating and uncomfortable, it is not life threatening. However, if left untreated, it may become lifestyle threatening.

There is also something called Autonomic Dysreflexia.

So, what is Autonomic Dysreflexia?

Most patients who are paraplegics and quadraplegics suffer AD. Here is some information on it...

Mild Dysreflexia:

Sweating. The first sign is usually profuse sweating on the face and neck - that is, above the level of the injury.

Mild Increase in Blood Pressure (Up to 140/90). Since the typical resting blood pressure (BP) for a quadriplegic is 90/60 (which is low normal), even a BP of 120/80 could suggest dysreflexia. Until the blood pressure reaches higher levels, the situation is not urgent, but it is important to try to identify and eliminate the cause before this happens.

Severe Dysreflexia - A Medical Emergency!

Hypertension. When the BP reaches 200/100 or higher, it should be considered an emergency because the sudden change from very low to very high blood pressure can lead to convulsions, stroke, hemorrhage or even death. The BP can rise quickly during an episode of dysreflexia, so it is important to check the BP frequently, at least every 5-10 minutes until the cause has been found and eliminated.

Pounding Headache. The headache is due to the sudden elevation of blood pressure; however, the severity of the headache is not necessarily related to the severity of the hypertension. Therefore, headache is not a reliable indicator of when the BP is dangerously high. A headache associated with normal blood pressure is not due to dysreflexia.

Heart Rate Changes. The heart rate can either be very slow (bradycardia) or very fast (tachycardia) during an episode, so heart rate alone does not help to make the diagnosis.

Flushing (Reddening) of the Face and Neck (above the level of SCI) associated with pale, cold skin on the trunk and extremities (below the SCI).

Less common symptoms include nasal congestion, anxiety, nausea, blurred vision, difficulty breathing, increased spasticity, chest pain and "goose bumps." However, these symptoms alone do not suggest dysreflexia. http://www.spinalcord.ar.gov/Fact%20Sheets%20html/dysreflexia.html

I would be somewhere between mild and severe. My symptoms from this list are: sweating, mild to high increase in blood pressure; heart rate changes; flushing; nasal congestion; anxiety; nausea; blurred vision; difficulty breathing; goose bumps.

Another site mentions "pilo-erection," the painful feeling on the scalp as the hair follicles go erect. If I brush against my hair at those times, it is quite painful.

What's the difference between the two, Dysautonomia and Autonomic Dysreflexia?

Well, I'm not sure. What I've read describes the former as being an out of balance autonomic system. Certain connective tissue diseases, like Marfans, Ehlers Danlos Syndrome and POTS are included as causes for Dysautonomia. Along with brain injury.

The AD, the causes are more trauma-related, and information explains that it is an interruption in the signals that are flowing up and down the spinal cord.

So, I think the two are at times related and have things in common...but at other times, you cannot simply substitute one for the other. I haven't seen anyone who seems to care enough to listen to figure this out for me. Oh, the nice neurologist who told me I have dysautonomia seemed to listen, and he did show me how the cerebellar tonsils are compressing the brainstem on my MRIs, BUT...I wasn't exactly sure that he understood what the AD was...and how that might relate to me.

Most of the time, I would say that it is AD that I suffer from.

My next post will explain why I was researching this out today...

but certainly, the episode I experienced today would fall right into line with the increased brainstem compression symptoms I've been having lately...

and perhaps...it really doesn't matter.

Again...I don't know. Someone knows out there. Some brilliant neurosurgeon who cares enough to listen to me and dig deeper and listen longer and care enough...

I haven't met him yet, though.

God's Grace and living with this instability!

2009-11-02T18:32:00.000-08:00

Last night, lying in bed, I could feel every millimeter along the edge of the back of my skull, stretching from ear to ear. Like a big smiley face painted on the back of my head, this etching revealed itself in precisely-located pain.

And I know what I did...and I know the price is too high to pay, even for time spent in those woods that beckon me in those wiley whispers too hard to resist.

I've now been "upped" to 150 mgs of Lyrica, which I take at bedtime. This is not a high dose; it is, in fact, the starting dosage recommended. It seems to work to a small degree, but I'll take any improvement I can get!

Feeling a little better, on Saturday I snapped the leashes on the dogs and walked slowly down the woodsey trail, stopping at one point to lie in the sun on warm pine needles and watch a crow fly overhead. The dogs looked at me curiously, as if to question what was wrong that I would stop in the midst of a walk to recline upon a carpet of pine needles; once they were sure I was fine, they also laid down at my side though Mickey stayed alert and watched the woods, his wariness producing a regal posture, indeed.

Mickey is not yet well-trained to the leash and he is still young. So, I must gently jerk the choke chain back in order to remind him to stay beside me, or behind me if the trail is narrow. I KNOW that this action with my arm is NOT good for my skull base. Though it's not too uncomfortable at the time I do it, I know it is kinetically affecting the nerves in my upper C-spine...but I do it just the same. They are small jerks, not even "jerks" really. And remind me of the gentle tugs on the reins I'd given snaffle bit horses for most of my life. Such thoughts cause slight smiles to cross my face, and that feels good.

Sunday was another sunny, Autumn day, and I succumbed once again. Two days in a row. Yes, I succumbed and went the 15 minute loop through the oaks and Ponderosa Pine, needles and cones and wet leaves beneath my shoes.

Sunday night....the bill came.

Last week, I had a couple of episodes that surpassed the normal swallowing difficulties I experience. In one, I was eating, absent-mindedly, some Triscuits. Watching TV and breaking off little bites and putting those into my mouth, I failed to notice that the food wasn't going "down."

As I've written here before, one bite of food will usually move the previous bite on down the esophagus, but this time, it was all bunched up at the back of my mouth. Without a gag reflex, I was not choking or gagging and was completely oblivious to the accumulation of food, perhaps the equivalent of one and a half crackers.

By the time I became aware of it, it was a wet bolus of chewed-up cracker that was in the neverland between my mouth and the top of my esophagus (forgive me of there is a medical term for this area!). I could not swallow it, and I could not easily make it come back into my mouth. (for the squeamish, I apologize).

I was afraid to try to cough it back up, for fear that I would set off a spasm I could not control. I found that I could not breathe through my mouth and that caused a bit of anxiety, as nose-breathing wasn't doing too well, either. I got a little bit of water, and took tiny sips of it, which, thank God, started the food moving downward, a little bit at a time.

I could feel every bit of its journey south.

On Saturday, I aspirated. I have not done this in a long time. I was eating a small bit of licorice and when I swallowed, it went "the wrong way." We all know what that feels like! I did cough with this situation, coughing and coughing until I felt like I had coughed up whatever was possible to retrieve.

Aspiration is serious stuff. They say this is the #1 cause of death in stroke patients. Due to their brain injury, they also have difficulty swallowing, and some end up aspirating fluid into the lungs and develop pneumonia, which is becomes fatal. With no gag reflex, this is something I need to be on guard against. But whoever is 100% aware of the food they are eating and fluids they are swallowing 100% of the time?

Then, Sunday night. Last night, after the walk in the woods, which left me in so much painful weakness I was a blob in the recliner until the pain meds kicked in, I started noticing food was not "going down." Late in the evening, after taking the tiny oxycodone pill, it was lodged at the top of the esophagus, and wasn't going anywhere. I tried drinking water but that wasn't helping. I thought to take a small piece of bread or something to try to move the pill on down, but I was out of options. I knew the food wouldn't go down either. Finally, I (futilely, I mistakenly thought) took a little sip of water and that moved the pill south. I was able to go to bed, but as I wrote at the start of this post, I was SO hurting around the whole back-edge of my skull. After an hour, I finally did fall asleep.

1) This is brainstem stuff. No gag reflex. Swallowing problems like this. Having to sleep with a portable fan about 10" away from my face so it blows air into my open mouth and will keep me breathing all night.... I've continued to have this sore throat (since my injury...a long time!) but it is so much worse with talking. And I feel "sticking" of my diaphragm, but that has been a long-time complaint, as well.

2) If I feel up to walking in the woods again, I need to wear my CTO. I'm ashamed to say that I did not wear it because I can't handle a walking stick AND dog leashes, and with a CTO, I absolutely need a walking stick to feel my way so I don't take a tumble. This is just a deer trail with lots of limbs to step over, rocks in the trail, etc. I know falling would be disastrous for me. But, I need to be firm with myself about this: CTO if I go for walks! Even if it means I don't get the little endorphins from working with the dogs and being a trainer again.

God's Grace. The Bible tells us that the Lord gives us all the grace necessary in our time of need. We are told "His Grace is sufficient for us." And I believe this is true. I got to see it first-hand the other day...

I was talking to my Mom on the phone. And explaining to her again about how I have to be careful to control my emotions, to not allow myself to get "riled up," or too excited, or too happy, any sort of "high" emotion, because when I do, as I've written here before, I get very distinct symptoms including a jump in blood pressure which causes a flushed feeling all over my head, a painful "pilo-erection" of my scalp-hair follicles, sweating above the C1 level and over all painful weakness.

She commented, "How sad that you cannot allow yourself to feel exuberant joy!" and I truthfully replie, "Oh, that's okay, Mom. By this time, I've come to accept this as just the way things are. I have learned to deal with it as best I can."

I had my last phone interview with one of my work comp medical examiners, and this time it was the neuropsychologist. He asked, "Are you depressed? Do you feel sad when you think about your situation?"

And I honestly answered, "Is there a difference between emotionalism and depression? Because I do not feel depressed. I am very happy with my home and my life and my wonderful life partner/husband and the woods and scenery that surrounds us. I feel my blessings are abundant! But I do get emotional and even cry when I think about certain things, like my horse I left in California because I am too weak and sick to ride or care for him."

The doc said that he did feel there is a difference between depression and emotionalism. Maybe he was just being kind.

But I feel that this is all a sign, to me, of God's Grace at work. He has given me the Grace to accept things as they are, He has given me the strength to not be burdened with self-pity. If I can handle some of this with a smile, then it's all due to Him.

Every day that I am able to venture out of the yard to town, and I am wearing the CTO vest (which is every time I leave the yard), I must reply to various comments from the friendly folks in our town. Today, I heard from a passerby, "That musta hurt!"

I just smiled and said, "It was a long time ago."

Update on Lyrica and new doctor

2009-10-26T09:12:00.001-07:00

The Lyrica is working very well! I am taking only 100 mg, at bedtime, and am sleeping great. No bad dreams, and I don't feel too "druggy" when I wake up. It seems to help the oxycodone to be more effective...somehow.

The other thing that I noticed is that the Lyrica seems to have the most effect on the tethered cord symptoms (below the waist). It is very helpful for that. I am still very weak, and if I start to walk or "do" much, I feel the TC pain. But just sitting, resting, lying down, the TC pain seems alot more controlled.

I still have to take the 5 or 6 doses of 5 mg oxycodone throughout the day, however, for the continued pain at the back of my head. (I am going to get an appt. this week, I think, to ask my primary to up my dosage on the Lyrica since I am still below the recommended starting-dose).

That back-of-the-head pain, in fact, seems to have amped up. I do not know exactly what that pain is from. I think I've written that the pain is higher than the occipital pain (under the bottom of the skull in back) that I also have. There is a strong pain that is higher, middle of the skull but just to the right of center, that haunts my days and cause me to spend hours each day with ice paks under my head.

It seems to fade in, get strong for a few seconds, then fade out...coming and going, a slow "pulse." I don't know what this pain is. I know from my MRIs that one of my cerebellar tonsils is pressing right up against the brainstem and that is on the right side (of course, posterior or "in back" of the brainstem). So, I don't know if this pain is from that pressing...or the blockage of CSF flow that that tonsil causes...I just don't know. I DO know it is too high to be the C1.

The pain I feel "sub-occipitally" IS from the C1, I think. I always have a very tender spot right in the center. You know...if you feel the back of your neck/head and you can feel those two tendons going up to the back of your skull and you can feel a deeper spot right in the middle. THAT is "sub occipital" which also is right where the back of the C1 is.

I remember when I broke my neck, I never thought that the neck, or cervical spine, went way "up there." I thought of my neck as just being what I saw from the front, under my jaw down to my shoulders. It never had dawned on me that the c-spine actually extends way up to the back of the skull!

I was lying in the hospital bed and my lackadaisical neurosurgeon (and my concerned husband) were at my bedside. My NS was telling me that it would take a long time, but I'd "be fine." I did not need surgery, he told me. In my drug-induced cloud of a mind, I was surely happy that I did not need a surgery (so I was told) nor a halo. That I could go home in the little collar he'd given me and in a month, I'd be "fine."

Right at that time, I told the NS that I hurting so badly at the back of my head that I was sure I was bleeding there. He scoffed at that. "No, you are not bleeding back there!" he said.

I demanded he put his finger back there and see if there was blood, it was hurting so badly. He did, and when his finger just touched that "spot" that I just described as being that deeper "hole" under the skull that you feel when you touch that area, I YOWLED with pain and yelled at him to take his finger away! Just that light touch was incredibly painful.

He didn't explain why it was hurting nor what it was, but later, through research online, I learned that that is the area you find the C1.

And today, 5.5 years later, I still have tenderness in that spot. It can be very tender, or just mildly so. Perhaps it is affected by times when my central nervous system is riled up. When the higher-up pain is slowly pulsing, that is when that deep spot is the most tender. If I touch it, I "feel" it. If I were to scrape it a bit with my finger nail (which I really avoid doing), I would YOWL with pain again just like I did right after my injury. Why it is so painful still is something I'd love to know...but one never, ever goes in to see a neurosurgeon and has enough time to ask such trivial questions.

I have an appointment with the new NS.

After being brushed off as being "spontaneously healed" by my NS of 3 years in NY, AND after being told there was nothing he could do for me by Dr. Henderson in MD (he said this on a phone message a week before I was to fly there for a consult. He'd never actually seen me when he offered this opinion, for whatever reason), I was rendered "neurosurgeonless."

My psyche was so jaded that I said I'd never go see a NS again. I expected to live with this the rest of my life, perhaps 30 more years.

BUT, my primary felt I needed to have someone "in charge of my neck." And then my work comp medical examiner also felt that it was strange I didn't have a NS to manage my care. So, my primary sent a request for a NS to the OHSU (Oregon Health and Sciences University) neurosurgical division.

How it works, I learned, is that the OHSU NS dept. (forgive my abbreviations, my hands and neck and brain are tiring) has many NS's there. They receive the initial request from my primary, they look it over and delegate it to one of their doctors.

I don't believe they received very much of my file. I believe it is a simple form that is filled out on my primary's part. There are 2 "skull base" experts in this department, and I expected I would be assigned to one of them. But I was not.

I have an appointment with Dr. Brian Ragal on Nov. 18. From his brief resume online, I do not really see any expertise in the area I am having problems with. But, I firmly feel God is in control of all of this, and who I see is up to Him.

I also am not going there with any expectations or Hope at all. I have seen the LORD allow me to go 3000 miles away, have a tethered spinal cord surgery, have nothing done for the instability of my skull base area, I've cried really hard many times over disappointment, including the cancellation of my appt. in Bethesda in September (such deep and painful disappointment to be cancelled without even being seen), that I am not going to allow myself to go to the place of Hope ever again.

I'm not going to build up Hope about being understood, being "fixed," or anything at this time. I hate the idea of going there and having to talk so much about my situation and what has happened and what I am experiencing, etc. I'm tired of talking about it, and talking causes me pain in the throat. But...it seems God has set this all up, it's not anything I have sought...so perhaps that IS the idea, isn't it. That God works when we give up and let Him do the "doing." I don't know.

I'll let you know.

I look to find the doe on the hill...

2009-10-20T10:03:00.000-07:00

I just looked thru the slats of the blinds at the window in my "rest room" (as opposed to what it is supposed to be, a "guest room") to see if the little doe is resting herself, under the oaks. I strained to see her silhouette, waiting for my eyes to adjust to the brighter sunlight, the constant color of dried grasses on the ground and orange leaves on the trees. I don't see her.

I relate to her, my weakness is outwardly personified in her body. My elderly neighbor called yesterday and we visited about the little deer. My neighbor looks, with a ranch woman's eyes, at the legs of the doe and notices a large lump on one leg, a leg she "stands on but favors," according to Esther.

I easily imagine that the little, crippled doe embodies Esther's own feelings of increasing debilitation, for, at 83 and counting, the once-rowdy, vibrant cowgirl is but a dim memory of her former self.

I'd been doing well on the Lyrica, so well, I was surprised. Day before yesterday, I even walked across the road to the Ponderosa-filled, little canyon which has been seductively calling to me every day since I have lived here. I took the dogs and we saw the local flock of turkeys, who ground-flew away from us at first, nervous sight of our perceived predatory presence.

Yesterday morning, I felt "like a million bucks." Like my normal self, almost.

I've been taking about half the amount of pain killers since I take them only PRN, "as needed."

But this morning, it all crashed down and again, every cell in my body pained in such a way that I ended up back in bed in the guest/rest room and waited for the oxycodone to take the edge off the episode.

All morning, I've noticed I've been stopping breathing. In other words, my brain is not signally my body to breathe automatically and when I stop thinking about it...I stop breathing. I become aware that I've not taken up the inhalation, then purse my lips to draw in sweet breath of life.

It was a grand few days!

I knew this might happen. I remember the sweet release of morphine in MSContin for about a week, then it seemed to lose its effectiveness.

With spinal cord/central nervous system damage and issues, this is the sport we're involved in. The meds can mask the pain, which then allows us to do more, to give in to siren calls, and then, payback comes no matter the medications. Because the damage is always there, lurking lesions on the cord that never go away and can only be hidden for brief interludes.

When the meds kick in, I get up and move about a little. Most of the time, this helps but when it's really bad, like today, movement makes it worse.

Perhaps the little doe got hit by a car...suffered spinal cord damage herself. Rests when she must, stands up and walks a little when she is restless...she is in as good a place as she can be, surrounded by acorns. Perhaps I'll ask Pete to take her a bucket of water.

The dog lets me know...

2009-10-19T13:06:00.000-07:00

The dog lets me know that the yearling deer is once again on the hill behind our house, nuzzling for acorns under the rusty-haired oaks.

This, of course, is not the same yearling I wrote about last Fall and Winter. This is 2008's fawn, pushed out by Mom so she can raise her newest baby.

I've seen this one in the front yard, drinking from the birdbath. I noticed the petunias and geraniums, the leaves of the frosted cherry-tomato plants and the wide leaves of the lingering green beans all have been nibbled by some fearless, young deer.

She (or he, I'm not sure) should be fearless, for she was born here, up under the oaks. All of her mother's fawns have slithered out of her in the safety of our upper acres, which are fenced from dogs, even ours, by sturdy chainlink.

This one noses around in the wet leaves that have been dropped by recent storms, and finding what she is seeking, she lifts her head slightly and chews on the acorns that will help to sustain her all winter. As long as it is a mild winter without several feet of snow which would prevent her from being able to paw down to the tasty morsels.

She treads lightly down the ancient deer path and settles quietly into the spot she favors because it is sheltered by the small oaks and because her mother's amniotic fluids have soaked into the earth over the years, her mother's...and her grandmother's most likely as well.

I see her silhouette, just her slim neck and her large ears, as she rests, watchful yet secure in a spot that speaks to her spirit in ways she will never contemplate or care to understand.

more thinking about Morphometrics...

2009-10-16T23:01:00.000-07:00

...actually, more thinking about what the data is showing.

I wrote in my last post that my C1 must have slipped forward...but I'm realizing now that I was wrong. The C1 must have slipped BACK, which allowed the skull to slip forward as Dr. Milhorat said it had.

Which would really account for what I was shown in my 3D CT scan, where the back of my skull is actually resting on the back of the C1 (there should be something like half an inch between the two).

IF the C1 slipped back, that would place it further from the basion or clivus bone. And that is what the morphometrics state...

And if the C1 slipped back, it would allow the skull to slip forward, which would place the clivus closer to the tip of the dens (C2)?

As I said, it's all so convoluted. Nothing applies to me. And I just can't be that person who says, Oh well, it is what it is! I have this drive inside me to understand, to KNOW where things are. I don't know why. Perhaps other patients reading this can relate to what I'm saying. I have this deep NEED to know what is going on and why.

I feel that striving for that understanding will help me if surgery is ever offered to me. I will know the right questions to ask, and I will have more information on which to base my decision.

That is, IF I can remember what I learn. That is not a joke. I seem to be in a constant state of relearning. I learn something, I have those AHA moments...then get all "AHA'd" again a few months later, learning the exact thing again! I take notes, I write here and print it out, I try to keep it all organized, but I can't seem to keep it all in my memory.

What I also got from studying these morphometric findings is a clearer understanding that my anatomical situation IS something that baffles all doctors. It's simply not in the medical journals and studies and articles online. Oh, info on Jefferson Fractures can easily be found...but what happened with my skull and all of that, it's almost unheard of. So, who would know what to do for it?

The graphic on my last post, which is right below this, shows a Jefferson Fracture with 2 breaks. Mine had four breaks. You can see that "dens" or odontoid bone of the C2, sticking up through the C1.

Okay, dear readers, any questions? You'll be tested on this in a few days, so study hard!!

Morphometics Part II

2009-10-16T21:13:00.000-07:00

The next measurement on my morphometrics sheet of interest to me is the

"basion-atlas interval."

The first installment of this series dealt with the measurement between the basion, the part of the skull in front of the big hole (foramen magnum) that your spinal cords travels up through to your brain, becoming your brainstem, AND the tip of the dens (pointy finger of bone sticking up from the C2). That was the basion-dens interval.

But now, we are looking at the basion-atlas interval. The distance between the basion (described above) and the atlas, or C1. Normies average 1.8 mm in this distance with a span of 0 mm and 3.0.

This measurement is so small because, in normies, your skull is sitting right on the C1!! Remember, I said in the last installment that the C1 and the occipital bones mesh together? That that was what became dislocated in my anatomy when I fell onto my head? That is why, in the normal range, you see it starts with 0 mm and runs up to only 3.0 mm.

What is MY distance between the basion, the area in front of the foramen magnum (big hole) and my C1 (atlas)?

12.0

Lying down. Supine.

When I am sitting up, under CT, the distance becomes even larger: 12.1, 12.6, 12.8.

I'm struggling to wrap my mind around this, to understand what this means. I know I'm no doctor...but I've been studying this for over five years as I've been my sole advocate for my care, as I've battled my way through various neurosurgeons who have not always had my best interests at heart.

My NY neurosurgeon told me many times that I was a pain in the ass patient. He told me that most neurosurgeons would have nothing to do with me but that he was willing to take me on as a patient and to help. He meant that I was a pain in the ass to other neurosurgeons who have never seen anyone in my situation before and would not know what to do with me. But I was not a "PIA" to him.

So, my skull is very, very close to the tip of the C2, the odontoid. Much closer than normal, much closer than the lowest control study patient.

But...my skull is further away from the C1, A LOT further than away than normies's skulls are from their C1s. Remember, you normies have your skulls about 1.8 mm on average from your atlas bone, C1, because the skull does sit on the atlas bone. At the occipital condyles.

But...MY occipital condyles were dislocated due to the injury/fall. And now, my skull is almost 13 mm (upright) from MY C1.

Hhhmmmm....

there's the skull, C1, C2, working consecutively from the top down.
My skull is closer to the C2 than normal, but further away from the C1 than normal.

How is this even possible?

The only premise that makes sense is that my skull slid forward and downward. Moving the skull further from the C1...but closer to the C2.

In fact, my other NY neuro told me, when these morphometrics were done and after several doctors stood around the computer screens for an hour while I hung in the invasive traction, that when I broke my C1 into four pieces, that was not the only injury I incurred.

I also had my skull break loose from my C1 and slide forward and down. He told me that my skull had, in fact, fused back into place in that position. A wrong position, but hey, it works, sort of.

This doesn't really answer ALL of my questions. I'm not exactly "getting it." But it is giving me more of an understanding of just how messed up my "cranio cervical junction" is!

Morphometrics Part I

2009-10-16T20:35:00.000-07:00

Hmmm, what is that?

Well, it seems to be a field of study where angles, lengths, relationships, patterns of organisms are recorded and compared, then used in various scientific data recording. It can serve a variety of purposes.

In medicine, at times, it is used for diagnosis. Where I have been going for treatment in New York, morphometrics is used for just this reason.

I have the print out of these measurements, taken from viewing various CT scans I had done in New York.

There is a section for data titled "Cranio-Cervical Junction." Those not into medicalese can probably figure out that this is right where my problems lie: cranio: skull....cervical is the upper part of the spine. With my Jefferson Fracture of the C1 and "dislocation of the occipital condyles"....this is exactly the area that causes my ongoing problems (except for the pain and weakness in my lower extremities and lower back, which results either from anamolies at my "CCJ" or my tethered cord surgery area (L4, L5, L6, or both).

On this sheet, I see a measurement listed as the "Basion-Dens Interval." I know what this is, but can I explain it? The Dens is the finger-like bone that sticks upward as part of the C2 (axis) vertebra. The C1 (atlas) is a ring which sits over the C2 and together they articulate so that the head and neck can turn in many, many different positions. In fact, this articulation and action is the most varied joint in the body. Just think of how much you can move your head and turn it in so many different positions! (not me, but hopefully, you can! ha!)

Okay, that was the "dens." Now, what's the "basion?" The basion is the clivus bone, and the clivus bone is the part of the skull that is just forward of the foramen magnum. Got it? No?

The foramen magnum is the hole in the bottom of the skull which allows the spinal cord that runs up inside your spine to enter the skull. In fact, when the cord gets up high toward the brain, it becomes the brainstem. The dens (or odontoid) of the C2 should NOT be poking up through the foramen magum.

Your skull rests upon C1. The portions of the bony skull that sits upon C1 and which surround that big hole, the foramen magnum, are: the clivus bone (or basion)which is anterior, or toward the front of that big hole, the foramen magnum...

the occipital condyles which are lateral to the big hole, or to each side. These two occipital condyles actually mesh together with the C1. This is what broke loose on me when I fell from the horse and broke my C1...

and...the occipital bone, which is behind the big hole (foramen magnum). Reach up behind the base of your skull and cup it with your hand...that is the occipital bone.

So...this particular measurement on my morphometrics sheet, the "basion-dens interval," is measuring from the bony part of the skull in front of the foramen magnum down to the tip of the dens, which is, you recall, the bony finger (or "tooth" ie dens) that sticks up from C2.

The specialists take these measurements and compare them to the control study of measurements taken on people without problems at the cranio cervical junction. (we call them "normies.")

My own personal data states that the "normal" readings are an average of 7.4 mm (5.8 - 9.0)

Again, the normal readings run 5.8 to 9.0 mms as a distance between the basion and dens, with an average of 7.4.

The distance between MY basion and dens?

2.4 mm.

This was when I was lying down, without the weight of my head on my spine.
There is data here from when I was upright under CT, and the space closes even more! 2.2, 2.1 and 2.9 mm are recorded.

So, this seems to project, obviously, that the dens is much closer to the basion or clivus than it is supposed to be! No brag, just fact.

I mean, a lot closer.

So that I won't fry your brain with this I will close here and start a new post, a continuation of what I see in my morphometrics. If your eyes haven't glazed over, that is!

Lyrica and new doctor search and snow! Oh my!

2009-10-13T20:29:00.001-07:00

I received authorization from my work comp insurance to seek out a new neurosurgeon at Oregon Health and Sciences University in Portland, OR. I am so relieved! Since a bogus report was filed by my NY neurosurgeon with my insurance, I wondered if they'd believe him, or me. It seems they believe me. Thank God.

I will call OHSU tomorrow and see if they'd like me to send the CD of imaging that was done in NY last June. There's a lot of cool imaging there to be seen, CINE MRI (shows the flow of cerebrospinal fluid); 3D CT scans; MRIs and CTs and xrays.

So, it's starting all over now, with me explaining once again my entire situation and how I got to where I am now, and hopefully, I will have a caring physician who will listen to me, who will think wisely and deeply and will honor what I know, what I've experienced, and what I'm dealing with now.

I saw my primary today and we talked about the new NS search. I also talked to him about how much pain I am in. Even though I'm taking the maximum dose of oxycodone that he has prescribed, I am always in pain, and usually, most often, in a LOT of heavy duty pain.

He thought I should try Lyrica, which is an anti-convulsant but has been found to be effective in central nervous system pain such as is found in spinal cord injury. I think I've been reluctant to try it because I've heard what a "weight gainer" it is, but I'm going to try it. Tonight will be my first, small dose.

The other day, I snipped the last gladiola, a graceful, pink one, and brought it in the house, placing it in water in the antique, rose-garden vase I have.

This morning, we had our first snow of the season! Big flakes came down steady for about 30 minutes. A dusting of snow is still hanging around. My nurse told me that she was born and raised here, and has never seen snow this early. Confirming her memory, the Portland weatherman said that this snow certainly did set a new record for early snow. The previous record was snow on Oct. 26, I believe.

Well, I won't stay here long. Pain starts in the back of my head, even tho I recently took a pain pill. This is why I don't post too often, but I think of my readers all the time! I make notes of observation, ideas to post about, but the times comes and goes and the thought seems irrelevant.

Wild turkey and deer abound in our yard each day. The deer must have come up on our little front deck and eaten the pink petunias that were still, hardily blossoming in a big, decorative pot. The other day, a lovely fawn was drinking from the birdbath, melting a hole in the ice with her warm, black nose.

Central Pain Syndrome

2009-10-03T09:51:00.000-07:00

I just thought I'd post here, from the NIH website, the definition of Central Pain Syndrome. Many of the readers here have this, but do not know the name for what they are dealing with.

What is Central Pain Syndrome?
Central pain syndrome is a neurological condition caused by damage to or dysfunction of the central nervous system (CNS), which includes the brain, brainstem, and spinal cord. This syndrome can be caused by stroke, multiple sclerosis, tumors, epilepsy, brain or spinal cord trauma, or Parkinson's disease.

The character of the pain associated with this syndrome differs widely among individuals partly because of the variety of potential causes. Central pain syndrome may affect a large portion of the body or may be more restricted to specific areas, such as hands or feet. The extent of pain is usually related to the cause of the CNS injury or damage.

Pain is typically constant, may be moderate to severe in intensity, and is often made worse by touch, movement, emotions, and temperature changes, usually cold temperatures. Individuals experience one or more types of pain sensations, the most prominent being burning. Mingled with the burning may be sensations of "pins and needles;" pressing, lacerating, or aching pain; and brief, intolerable bursts of sharp pain similar to the pain caused by a dental probe on an exposed nerve.

Individuals may have numbness in the areas affected by the pain. The burning and loss of touch sensations are usually most severe on the distant parts of the body, such as the feet or hands. Central pain syndrome often begins shortly after the causative injury or damage, but may be delayed by months or even years, especially if it is related to post-stroke pain.

Is there any treatment?
Pain medications often provide some reduction of pain, but not complete relief of pain, for those affected by central pain syndrome. Tricyclic antidepressants such as nortriptyline or anticonvulsants such as neurontin (gabapentin) can be useful. Lowering stress levels appears to reduce pain.

What is the prognosis?
Central pain syndrome is not a fatal disorder, but the syndrome causes disabling chronic pain and suffering among the majority of individuals who have it.

http://www.ninds.nih.gov/disorders/central_pain/central_pain.htm

Semantics and Complaints

2009-10-01T09:36:00.001-07:00

When doctors write down your symptoms, they list them as "complaints."

They write in their reports: "patient complains of .... "

Yet, as I noted in the last post here, most of us were conditioned by our parents and teachers not to complain.

"Complain" has such a negative connotation. It conjures up whining little kids, crying because big brother took her lollipop!

"Buck up!" "Cowboy up!" I've heard some people say, "Put on your big-girl panties!"

Which is all well and good, serves some useful purposes, I know. But when you are in deep, chronic pain, the kind that emanates from the spinal cord, you perhaps can "buck up, little buckaroo" at home, among your family and friends, but when you are with your doctor, you need to present those "complaints."

I always take a detailed symptom list to a new doctor. I save it on my computer, as well. Since I've been dealing so long with this now, it has proven valuable, as I've been able to tell a doctor, "Look, I reported this swallowing problem five years ago!" (Time does go by fast when you're having fun, they say.)

So....what does a doctor think when he hears the word, "complaint."

He was probably raised the same way we were. And when a patient presents a list of symptoms or tells of a problem, does this doctor instinctively judge the patient before him or her, remembering their own upbringing, perhaps a teacher telling them to stop crying and go back onto the playground and push that bully back?

Does he or she care enough to battle those instincts?

There's a book out called "How Doctors Think" or something like that. I need to get that book. I have a feeling this issue might be in it.

Up north, the old cowboys have a saying.

A horse might run into the corral with the rest of the remuda, but she is limping and presenting with a gaping, bleeding wound.

The crusty, old-timers will often say, "Ah...it's a long way from 'er heart!"

Meaning, it's a simple thing not worthy of worrying about. It won't kill her ( how often they've been proved wrong is not known, however).

Who's this for?

2009-10-01T08:30:00.000-07:00

Oh, the pain this morning!

It gets me frustrated sometimes that just doing things that are simple ends up with me enduring this all-over, central pain.

I mean, it's not like I'm out riding roller coasters or anything! I wonder how I'd feel if I rented a horse and went for a ride? Couldn't feel worse, I don't think. Don't worry, I am too weak to climb on a horse anyway.

The other day, a fellow "Chiarian" (not to be confused with my fellow "Martians!") came over to spend the night. I enjoyed her visit so much. She stayed about 21 hours, all tolled, and at least 7 hours of that, we were sleeping.

But, oh, all that talking! We had so much to catch up on, it was so needful for us to talk. She has had the craniocervical fusion that I have been expecting to have for so long. But she wants to have her skull rods removed. She says they cause her so much pain.

At one time, she felt very sure her problems, post-fusion, were due to a tethered spinal cord. She considered seeking surgery for it. Since I've had the TC surgery, I am now able to tell her, "I'm so glad that you didn't have this surgery! It didn't resolve any pain issues for me and in fact, I have more pain than ever now."

So, it seems interesting that she had a surgery I have longed for, and she wishes she hadn't had it. And I had a different surgery that she wished for, and...well, I can't say I wish I hadn't. My faith won't let me say that. But I sure couldn't push her toward it!

After her drove from my driveway and I closed the gate at the road, I laid down and suffered so badly for the next 24 hours with pain behind the head. I had tried to keep things low key and not laugh much...I attempted to let her to do more talking than me (very hard, I know!)

Then, yesterday, I went to our shopping town and, yes, I admit it, I dared to walk straight through to Home Depot's paint department and select some paint, and then carried that gallon out to the truck where my husband/driver awaited. How dare I!! Last night...this morning...my body is letting me know that I rebelliously had pushed past my pain-inflicted restrictions.

Ah, someone just sent me an email. An old friend, asking for my phone number so that he can call and "catch up." Now, I'm in the position of having to tell him that I just don't "do phones." It's the "talking thing," you see. Though I'd love to visit with him and see how he's doing, I won't.

I posted on the Chiari support group site (where I help moderate) a question concerning others experiencing occipital pain from talking. I was surprised at how many took the time from their hurting days and told me that, yes, this is a common complaint for them.

I know it's been an evolutionary thing. Right after I broke my neck, with a raging spirit straining against the harness to return to "normal," I went back to playing music and singing in a little bluegrass band I was in. Finally, 5 months after my injury and after hosting a little show (and singing/playing), I knew it was my last time on stage.

Such a big thing for me to give up, just like horses. I played mandolin, banjo, rhythm and lead guitar and sang lead and harmony vocals. We mostly sang Gospel music and entertained at churches. But, I found that the singing led to such debilitating pain. I felt like the back of my head was a sound chamber and the act of singing and bouncing those notes around was the reason for the backlash of pain and whole body weakness. I knew, on that September night in California, that I could no longer perform on stage.

I often think of visiting cowboy poetry shows to see old friends. But, first, the talking and laughing would do a number on me. And I'd have to explain over and over why I was not performing. And everyone wouldn't recognize me anyway. Oh, they'd probably know my face, even though I weigh 40 lbs more than the last time they'd seen me. But they would not recognize my outward personality, I suspect.

So, it started with singing...and has now evolved into talking, as well.

I saw my primary doctor the other day, and he is starting the "ball rolling" on getting me a new neurosurgeon at Oregon Health and Sciences University. I already go there to see my endocrinologist, Dr. Madison, who is excellent. My primary feels I need someone to take care of my neck. One of my AMEs (agreed upon medical examiner) also feels I need a specialist. Sounds like when I gave up seeking help, some of these doctors became willing to show compassion and seek help for me.

I don't know if I want surgery or not. It will depend on what the surgeon says. I guess that I have been bashed around by neurosurgical specialists so much lately that I have finally given up hope of being "better." And I sure don't want to go through that and be worse. So, we'll see.

And it will depend upon how I progress or decline as time goes along.

I have received so many emails from folks I don't know, who follow this blog and tell me that they get so much from it, that I give voice to their own pain, frustrations, fears, etc. Those notes really keep me going.

It also helps me because I was taught, like most of us were, not to complain or whine. To put a smile on and face the world. To "not" give a voice to that pain! Cowboy up!!

And that gives me a little guilt about writing here about the pain.

I also think of my friends who come here for updates. And, I feel badly that all they get to read is how bad I feel! But then I've come to the understanding that these posts are for fellow sufferers. And friends and family can read if they wish...if they can stand it (!)....but mainly, this one's for those who suffer with pain every minute,

who have families who do not understand...
who have doctors who belittle them or disbelieve them...
who cling to hope while facing reality....
who question their faith and wonder if they can hold on....
who pray for a doctor that will understand, listen, have new ideas, validate their symptoms...
who wish for normalcy...
who understand what it's like not to be able to call your mom as often as you'd like...
who would never consider suicide and are not depressed,
yet who sometimes look forward to heaven where there is no pain...
who need a friend, a compatriot in this struggle.

No more tiny needles

2009-09-21T22:16:00.000-07:00

Today, I went to the acupuncturist and told him that I didn't want to come there anymore.

It's too far, 35 miles one way, and I feel nothing whatsoever from the treatment.

I told him that probably it's my fault, I can't come every week and perhaps it would have helped some if I'd been able to. But it's too painful for me to go that far each week. I don't even go "into town" that often, and I live inside the city limits!

We discussed a bit about what acupuncture has done for his other patients. I asked him if he ever treated anyone with "central pain."

He said, "Meaning?"

"Central Nervous System stuff...spinal cord damage," I answered.

He curtly replied, "Pain is pain." [From this, I could tell he was not familiar with the Central Nervous System]

Not in the mood or the mode to argue, I let him insert a few needles. As usual, he dimmed the lights and walked out, leaving me on the hard table. I lay there praying he'd come back soon, because the one, lifeless pillow under my head was no padding for the back of my skull. I gave myself some loose perameters ("If I start getting the lightning pains in the back of my skull, I'll get up, needles or no").

He usually leaves me there for 15 minutes but I'm sure I was there at least 30 minutes this time. I listened to any activity outside the door, and I'm sure he had no other patients.

When the lights were switched on, his friendly voice asked how I was doing.

"Okay, I guess, though the back of my head was sure hurting on this uncomfortable pillow," I told him.

His manner had changed, he treated me with more deference and respect. After apologizing, he told me that with what I have going on, acupuncture would only offer some palliative results, not curative.

Meaning it might help lessen the pain, but it was too late to think it would take away the pain altogether.

I rather think he left me in the dark room for so long because he was on the internet studying the difference between peripheral pain and central pain.

If so, I give him credit for that.

I won't go back, but he was a nice man.

For that, at least, I am thankful.

Learning to live with disappointment...

2009-09-18T15:16:00.001-07:00

...and seeing the big picture...the reward later on.

Seems like my psyche has had a lot of disappointments lately.

I'll look up "disappoint" in my old "American College Dictionary," dated 1948.

To fail to fulfill the expectations or wishes of (a person);
2)to defeat the fulfillment of (hopes, plans, etc)
thwart; frustrate

A craniocervical fusion set for April 28 at The Chiari Institute in New York, only to be postponed due to situations there beyond my control.

That surgery re-scheduled for June 3. Thwarted.

A trip to Bethesda, MD to see a new doctor, an appointment that seemed filled with bright hope for the future. Cancelled by the doctor a week before I would leave to go see him.

A visit from my mother who lives 3000 miles away (and whom I've not seen in four years) and my sister who lives in Hawaii, I guess another 3000 miles in the opposite direction. They planned to meet here, something they've never done. I was full of expectation about their visit. Over the months since I'd bought my mother her first class ticket, I primped and preened our house and garden as much as my health would allow.

I looked at everything in my environment through my family's eyes. I planned on how to fix up a comfy room for my sister to stay in, and I made small changes to our guest room as I remembered my mother's wishes and likes, and her needs.

Suddenly, yesterday, a week before they were to arrive, we, as a group, agreed to cancel the trip altogether. My mother was filled with anxiety about leaving her home, and about flying. It seemed best to remove those anxieties and hope for a time in the future when we two daughters can fly back to her home and spend time with her that will be more relaxed for her.

I thought, as I suggested the change of plan, "No problem. I'm glad with just being home in my routine without company."

But almost everything I do reminds me of my excitement, my expectation of their arrival. How they would "see" my home, how much I knew they'd like it. It will take some time.

I'm still working my way through my grief at the loss of my appointment in Maryland, at the unexpected loss of a surgical plan, a future that would be a promise of less pain and more mobility. I know from experience there is nothing I can do to hurry myself through this process.

I put on a brave face and tell people I'm okay staying home and learning the lessons God has for me, about trusting Him fully. I talk to myself in convincing tones that I am so much happier NOT heading into a hospital operating room, not needing to become acclimated to long, titanium rods reaching from my upper skull to my C5.

I tell myself that, but deep down, my emotions are still linked to that hope I carried for so long. Not just the 3 years that I was a TCI patient, but longer than that, back to when I first contacted TCI...back to when I studied about fusions (and continued to do so even up to as recently as a month ago). And that link doesn't instantly dissolve in the bitter liquid of rejection (from doctors). It must be stronger than that.

At my age, I know that this feeling will pass. I know that I will get into a new direction and I'll be fine. And that I'll look back and know "it all worked out for the best." But right now, I'm still grieving that.

And my sister and mother not keeping their commitment to come visit (even though I know I was the one who suggested the cancellation) seems to irritate that same "nerve" of rejection that has been riled up by 3 neurosurgeons lately.

How fragile are we! How tender our spirits as we move from day to day, playing the part of the strong and stolid adult, making wise decisions, speaking the right words, speaking of Faith and "Letting go and letting God." When deep inside, we are frightened children so in need of comforting arms.

For me, it's a doctor I need. One who validates all that I've been through, and who promises to be there for me through the tough stuff.

A friend of mine just reported back to me on her visit with the same neurosurgeon I'd hoped to see in Maryland. Her outcome was so much different. He gave her honor and respect, he gave her a full evaluation. She was astounded by his wisdom and experience and he validated all of her pain and suffering with various diagnoses that he has plans with which to help her.

And I am honestly happy for her, but there's a hurting place inside of me where I feel like the kid that didn't get picked until last for a ball game on the playground. Only this is a much more important game, and not really a game at all.

I can't help wistfully thinking, "I wish I'd been able to go and come home with that validation, with a surgical plan so that there is hope for the future. With a caring neurosurgeon."

With a stoic demeanor, I hide these childish emotions. I have Faith that all will work out for me. I have Faith that what happened to me is what was meant to happen. I know, from experience, that I will go through these emotional valleys (especially when they are part and parcel of Post Traumatic Stress Disorder).

I know that at some point in the near future, my heart and my brain will wrap itself all around this, and I will forget the disappointment and despair I felt from abruptly-changed plans and unintentional rejection.

Given out by our local tire store, my calendar on the wall shows a New Hampshire-type, September scene, the old white farm house with black shutters, the red barns and outbuildings, nestled in a green valley surrounded by colorful maples, oaks and fir.

And below the picture, an inspirational note I'd not seen before:

Change is difficult but often essential to survival.

Chuck and Laurene and Diana

2009-09-14T17:50:00.000-07:00

Hey, Diana, I got your great messages, back on the post "hindsight is 20/20." I wrote you back. Hope you see this and will get back in touch with me. It would be nice to have someone else to touch base with...I've met a two others with Jefferson Frx who have contacted me through this blog: Janice and Krista. Would love to hear more of your story and get to know you better. Check out my message to you.

Chuck and Laurene, I got your email. Sometimes, when I email you, it bounces back to me. Perhaps your email inbox is full? I know you have tons of friends!!

hugs
BHG

A phone interview this morning...

2009-09-14T16:57:00.000-07:00

As it happened, this morning I had a phone interview with one of my "agreed medical examiners" who is making a consideration/decision on if I'm "permanent and stationary" yet, and, if so, what percentage I am permanently disabled.

This doctor has been wonderful in the past; I've seen him twice before and his reports have been spot-on for me; he has reported, for example, that, for over five years, I have been searching for help. I had to explain to him everything that happened in New York, and that mess, since a report was filed with my work comp insurance that my C1 had "spontaneously healed" and whatever I have must be Lyme or something (ridiculous).

He listened to every word without interruption. He let me read, word for word, what I wrote this morning in the midst of a very painful "neuro" event. I posted this verbatim under the topic titled, Primal Voice. This doctor was so honoring.

He asked the perfect, pointed questions and did not editorialize. How much can you lift? Can you lift a gallon of milk (yes, but I feel it at the back of my skull). Can you lift two gallons (yes, but the pain at the back of the skull would make me put it right back down).

He asked me who is taking care of my neck right now (No one. All I have is my primary, who states he is "not the Mayo Clinic" and "knows nothing about anything that is going on with me, but just will keep me plugged into the resources I need") The examiner did "editorialize" at that point, just a little. He asked me, "If he knows nothing about your situation, how can he "keep you plugged into the resources you need?"

He also asked me if I had a major event with my neck, what would I do right now?

Before I replied, I told him that I feel like an airplane pilot who is always looking, as she flies, for someplace to have a crash landing. Then I told him I'd heard of an orthopedic surgeon at OHSU in Portland, OR who worked on someone I'd met and did a good job. The examiner then asked me how far away OHSU is, and I said 2 hours.

I see 3 of these AME's (the one today is an orthopedic surgeon, the others are a neuropsychologist and a neurologist). I have phone interviews with the other 2 scheduled later this month and in October.

I got a little weepy with him, telling him I desperately need a doctor, someone who really wants to figure this out, no politics etc. Of course, I still believe that everything I was told in New York in the past is what is truly happening, that it's craniocervical instability and "severe" functional cranial settling.

God has blessed me. This doctor holds my future in his hands, as he decides financially and medically what I will need in the future. And God has given me trust in this doctor from the reports he's filed before. He's very business-like, no nonsense at those times when I see him or talk to him. But when he files his reports, he really seems to "get" the bad situation I'm in.

Primal Voice

2009-09-14T16:52:00.000-07:00

This morning, I woke up weak and sorta okay, but as usual, about five minutess of being up (and the weight of my head going all upon my spine and nerves etc), I got hit bad.

I had not done anything which caused this. In fact, believe it or not, I have not been out of the yard, not even across the street to get the mail, since I got home last Tuesday!

I wrote these things in the midst of that pain:

"There's something profoundly wrong. There's a lesion somewhere that no one is seeing. I'm no expert, just living in this body. Something is WRONG from the spinal cord. The pain is so profound--this morning---like being in a microwave [oven].

I hurt so terribly-- I need help. I need help. I need a truly excellent devoted doctor to look deeply-- maybe surgery is not the answer, but something is wrong. Somehow I got mixed up in politics [with neurosurgeons]. I've fought hard for myself for five years and no one else but me. I'm to the point of pain and weakness now, I wish I had a true advocate.

I don't have strength and in too much pain to fight anymore. Some mornings worse than others, this morning BAD and I feel exactly as bad as I did right out of the Tethered Cord surgery, which shows me it's spinal cord because the TC surgery was messing with the cord. When I yawn, piercing pain to right ear. Have to have fan 6" from my mouth when I go to bed [in order to keep breathing]...it's not the oxycodone, I'm on such low dose.
*****************************************************************

They say pain is truly hard to remember. If it were not so, there would be no second children born!

I include this, just to remind myself of what I was feeling.

Ligament damage; describing central pain

2009-09-14T15:21:00.000-07:00

I have so often notice (mostly every day) that my hands do not seem to belong to me.

I see my hands out in front of me getting a bowl from the cabinet, petting the dog, and there seems to be a "disconnect" between my brain and my upper appendages. Lying in bed at night, if I stop to think about where my hands are, without moving them, I really do not know. I might have my arm up, under my pillow, or down along my side. If I do not move my arm, then I do not really know for sure where my arms are.

I've noticed this while picking berries this fall, as well. Someone else's hands seem to snake out in front of me and start doing things! It's truly very strange!

While flying to New York in June, I watched the flight attendant reach up into a high cabinet for something, her arms and hands a graceful part of her body. And it reminded me strongly of how different the feeling is for me.

When I saw one of the neurosurgeons in NY (not the one I've seen for three years), though he had just met me and had not studied my imaging, though he had not done a personal neurological evaluation, he lashed out at me that I did not suffer any ligamentous injury when I broke my neck (thus defying the diagnosis of my main neurosurgeon at the time).

Such an experience left me very upset and defensive (this was only a small part of this surgeon's accusations), so I remember going back to the hotel and getting onto the internet and looking up cervical ligamentous injury. I was most surprised to see that one of the symptoms of damage to the cervical ligaments is this sensation that your hands and arms are not connected to the rest of your body!

In Jan. 2007, I was told (at The Chiari Institute) that I had "ripped, tore, ruptured, broke" ALL of my ligaments when I broke my neck. Of course, this made perfect sense because this explained why the C1 was allowed to spread and was not pulled back into place after the injury, why it has stayed "apart" and not healed.

I write this now just to record for myself this interesting finding. I have not heard from others I know on the internet that they suffer from this strange sensation (not to say that they don't), but found it very enlightening that this particular symptom is actually a symptom of ligament damage.

I'm going to try to find this information again on the net, and when I do, I'll post it here.
***************************************************************
I've written here many times that I struggle to find the words to describe the pain and strange sensations I deal with every day from this injury. The other day, as I prepared to lean down to turn off the faucet outside that was watering the lawn, the familiar burn from deep inside of me started to come to the surface; the sweat popped out in beads on the back of my neck and scalp; my hair follicles became painful (piloerection); and I felt overcome with painful weakness.

And the thought came to mind: I'm in a microwave oven, sizzling from the inside out. I'm like that proverbial poodle of urban legend. Every day, several times a day, I'm being "nuked!"

*******************************************
The weakness in my hands and arms is progressing, and I made notes about some of the things I'm struggling with. Doorknobs, typing, opening jars, water faucets, pressing buttons, squeezing things with fingers. And writing. I noticed I now do not write the two "dots" that come between the hour and the minutes when you write down a note of "time." I do this time recording five to six times a day, when I take an oxycodone, and one of the things that has made this easier is to eliminate the two "dots." Is there a name for those dots? Ah, I remember: a colon!

**********************************************

When you are in therapy, you are always self-diagnosing. It's sort of funny. You wonder if what you say, even as you are defending your sanity, is the very thing that is causing the therapist to believe you are crazy. When you are having difficulty getting a physical diagnosis, getting doctors to pay attention that there is a physical and anatomical reason why you are hurting, you worry that anything you say to them or to therapists is giving them fodder to believe that you're nuts, and all of your symptoms come from that level of nuttiness you have.

I remember when I was in the midst of my six months of speech therapy immediately following my injury. I finally admitted to my ST something that I knew would cause her to believe I needed to be straight-jacketed and hauled to the State Hospital, do not pass Go, do not collect $200!

I told her, "I play about ten games of Spyder Solitaire on the computer every day."

She said, in obvious shock, "REALLY?"

...

...

...

....

"I play about fifteen games of Spyder a day!! What level are you at?" she cried.

I had to admit to her then that I was really downplaying my weakness and at the time, I was playing more like 20 games a day.

I guess it goes to show that the ones who sit in judgment of us are just as apt as we are to have their own stages of looniness!

;-)

Meanderings....

2009-09-14T13:22:00.000-07:00

I've kept notes the last few months, things I'd write in my blog if I only had the energy or felt well enough. Maybe I'll throw one of those out here now.

One thing I want to emphasize is that even if I write so often about poor experiences with doctors and tremendous pain, I want you to know that I also have incredible beauty within my life each day.

There is much I view outside our living room window that blesses me, like the little goldfinches, born here in birdhouses built by my husband. I see them clinging with clenched, tiny feet to tall mullein spikes in the garden, to glean the seeds (and spread them, invasive weeds that they are) throughout the county and wherever goldfinches go in the winter!

Young bluebirds and goldfinches and others enjoying the water in our birdbath, looking glad they don't have to make the arduous flight to the river each day.

The garden-fresh salsa I make and freeze. Tomatoes that burden drooping branches, garlic dug up in the back flower bed, cilantro, onion, green chiles growing in the garden, all combine to make a flavorful concoction that gifts me time and time again. When I see it overflowing from the blender; when I see jars full and in the freezer; when I thaw it out and savor it on corn tortilla chips.

Breezes when they pour through the open windows and signal that they have come from the ocean to the west of us.

Late night winds that toss the American flag hung proudly from our front deck.

Soft ears on a dog lying on my lap while I watch TV.

The sight of a small deer, born in our back yard, bedding down out there under the oaks during a storm.

Deadheading flowers, a chore that has always been so quietly therapeutic for me.

***********************************************************************

Please keep in mind that I write what I do, sometimes allowing the "primal voice," so that others who are living with this chronic central nervous system pain can read something with which they relate, and so that those who do not understand this condition can have reasonable understanding and compassion on the ones in their lives who suffer with this, be it Multiple Sclerosis, Chiari Malformation, Syringomyelia, spinal cord injury etc.

PS, the photo above is one I took at Chilkoot Lake in Alaska, just one of those little blessings while we were waiting and hoping for big brown bears to come up the salmon-filled river.

The wound still runs deep...

2009-09-14T13:07:00.000-07:00

My husband makes beautiful custom spurs. I handle the "people" part of the business, talking with customers and figuring out what they want. I love doing it, but it also is quite tiring on me. But that's okay. It's a very small business so I don't have to do much of it.

Above is a photo of a pair of spurs that my husband made (not necessarily for me) while I was in the hospital in Nov. 2007. They became my favorites of his creations because they are small and lady-like, and feature bears. I kept them on the windowsill knowing the right woman would come along and love them like I do.

Two years later, the spurs have found a home. Cliff came to our house to order some spurs, bought a fancy bit, headstall and set of matching spurs that we had for sale (E. Garcia, not one of Pete's). And I showed him those little bear spurs. He bought them for his wife.

He said when she got them, that she adored them, took them to Grange and showed them off. He next brought over her new, small pink boots (Justins) for Pete to fit the spurs to the boots, add heel chains and jingle bobs.

What a sweet little set-up that is! I know, a working cowgirl would never wear pink boots, and neither would I back in "the day." But now, I am older and can't ride and that outfit looks so darn cute!

I needed to call Cliff to let him know that CJ's spurs and boots were ready, and I got to talk with CJ herself. Instantly, we found out we are kindred spirits.

She is 63, and rides 3-4x a week, she said. She described a recent ride where she and her riding friend got lost and rode up onto a peak to call Cliff and let him know they'd be late getting home, and then... things all started burning behind my eyes. She and I talked about breeds of horses (she has Peruvian Pasos) and training methods, and everything I know about horses surged to top like cream rising from the mouth of an old milk bottle left on the doorstep years ago on a frosty morn.

We talked about 45 minutes and I knew this was someone I clicked with. But...out of nowhere, I was overcome with hot tears and an inability to talk. I tried to hint that talking about this was hard for me. CJ, bless her heart, didn't get it right away and laughed and continued to talk about riding various horses and "keeping them rode," and such. I tried to speak but was choked up with emotion.

I finally had to tell her, "I'm sorry, but I can't talk about this anymore. You are who I always planned to be, growing old, feisty and foxy and free to ride the hills."

After hanging up, I guess part of the reason might be those little bear spurs. And also, the woman who purchased my dear horse, Shadow, when I realised I'd never be able to ride him, just emailed me and sent me lots of photos of him and her, she expressing her obvious affection for him.

Or...

it's just that some wounds are too deep to heal.

2009-09-12T21:04:00.000-07:00

I must apologize for not posting here in so long. I know I have many followers here who check often to see what is going on, and when I do not post, they think the worst. I appreciate that!

This will be short. I wrote a long blog update on Microsoft Works, intending to use "copy paste" to put it all here. However, in the last few days, and several times tonight, something is wrong with my system or something. When I hit "paste"...internet explorer shuts down.

So, briefly, I'm here.....we went to Alaska and had an incredible time. Even had a close encounter (safe kind) with a grizzly bear! I hope to write more about it later.

I am not going to Bethesda, MD, as it turns out. When I got home from AK, I checked my messages and there was one from the Bethesda doctor telling me, a week before my trip, to cancel my trip, he doesn't see anything on my imaging that shows anything he can surgically do for me.

I cried hard that night. I was so shocked. I had made the appt six weeks before! A dear friend in Maine had purchased tickets for herself and her husband to be there to help me get around. I felt hopeless, and lost all faith in the medical system. I was angry too. And yes, I asked God, "Why?" Why have me make these appointments only to be let down like this?

I questioned, to myself, why did this happen, why did the surgeon say he saw something in my imaging that made him want to see me, only to, a week before my trip, call and tell me he was cancelling my appt? I could only believe that something happened that had nothing to do with my imaging or what could be done for me...something happened to where he did not want me for a patient.

So, I know many of you are writing to me, wishing me well on my trip, but it happens I'm not going. At this point, I'm without a doctor in terms of a neurosurgeon. And mentally, I'm at the point where I'm going to just live with what I have, if it all continues to decline, I have to accept that this is my lot in life.

Of course, I might change my mind later, I might decide I need to see a surgeon, but in order to carry on, to pick myself up and dust myself off, I need to think that I'm just going to stay home and deal with what I have the best way I can. That there just isn't a "fix" for me. Short of a miracle.

So, good night and I hope I can get back on here soon. I think often of posts I want to make, of beautiful things I get to enjoy out the window. I want to share about Alaska, it is completely "as advertised!"

If I owe you an email, I'm sorry. I think of each of you all the time, truly I do. But answering emails seems continue to be difficult. But I'll try.

love to you
"By His Grace"

Livin' in the city, part two

2009-08-06T17:50:00.000-07:00

I woke up at 4:00 am today and, feeling kinda smarmy, I arose, took a pain pill, then laid back down in the guest room, where, suddenly, the pain washed over me in a tsunami of sensation.

I couldn't read anything and I couldn't sleep, so I finally got up and let the dogs go out for their morning ablutions.

I opened the screen-door. Within the passing of only a few seconds, as the killer-dog, Mickey, burst through the opening, I saw such an incredible scene like the flashing of a slide show upon a screen.

Over our fence, in the neighbor's yard, there was a group of about eight deer. I don't know if they were young or old or bucks or does.

But it was their ritual, performed in those haunting moments between the full moon going down and the eastern sky taking on a pale hue, that struck me and is with me still. It was, I imagine, something not usually seen by the eyes of us lowly humans.

About six deer milled around tightly in a circle, and, from the center of the circle, two other deer stood up very straight upon their hind legs. Facing each other, they were boxing -- in play, I presume. Striking out with their front hooves, perfectly balanced and facing off like Frasier and Ali.

Thrilla in Manila!

I'd seen things like this in the woods before and on Animal Planet, but what was different was how the other deer, not involved in the boxing match, were mingling in so close to the ones who were.

Then, seconds later, my murderous, standard-sized Dachshund spotted this scene and charged it for all he was worth without respect to the mystical goings-on. His loud yapping spooked the small herd which suddenly abandoned its play and took off for the woods across the road.

I'll never forget that sight!

Here I yam!

2009-08-06T17:45:00.000-07:00

Here's a photo taken of me near Great Neck New York last June.

Yukon Bound

2009-08-06T17:38:00.000-07:00

A month ago, I put together a vacation for my husband and myself. I know, sounds pretty silly when it's getting so hard for me to walk and do things. But, after years of hearing my husband say that he wanted to see Alaska and he wanted to go to the Klondike, I was inspired to put it all together, while I am still mobile enough to go.

We will leave in early Sept. and fly to Seattle and then to Juneau. From there, we'll ferry to Skagway, where I have rented a log cabin in the woods for five nights. I can't wait!

Our cabin sits right along the Chilkoot Trail, where thousands of poor souls started their treacherous journey to the goldfields of the Yukon. If we feel up to it, we can drive from Skagway up over White Pass, to Whitehorse and then back down to Haines, Alaska, then ferry back to our cabin at Skag.

How we will enjoy investigating the historic buildings of the Gold Rush era in Skagway and Haines and Whitehorse, drinking in the mighty mountain views, watching for whales as we sail 6 hours north of Juneau! I'll be sure to share some photos when we get back.

hindsight is 20 20

2009-08-06T17:23:00.001-07:00

Looking back now, I can see where it's been coming on for quite some time.

But I ignored it, figuring if that was my only problem, I can live with that.

I'm talking about the weakness in my hands and arms.

I knew that it was getting hard to open jar lids or bottle tops...that cutting anything like a block of cheese with a knife was getting difficult. That way of holding the knife lends itself to excerbating the weakness...really shows it up.

Now, my hands are weak all the time. Cutting a slice of cheese off a chunk is nigh impossible. Using a can opener? No can do. I've become much more aware of turning door knobs

Typing.

Holding a newspaper up to read it.

Or a book while lying in bed.

Holding the phone. When I'm done talking to someone, my hands and arms hurt so much.

It's not a stretch of the imagination and it didn't take an old Indian tracker to see this one coming. Because, when I regained consciousness after my injury, I felt the electricity zapping through my arms down into my hands, and down my legs into my feet. I prayed to not be rendered paralyzed and that prayer was answered, thank God.

After my horse wreck, I did have problems with my arms. If I used them, they'd get painfully itchy, and also have lancinating pains sparking here and there throughout them.

That horrendous, central nervous system itch went away for awhile. And it didn't seem like my hands were the main problem and I was able to continue on to some extent.

How I'm wired is that I will "do" and keep on "doing" far past signs of pain or weakness. So, there is no excuse for my weakness to progress, unless it is from the spinal cord. I mean, I am my own physical therapist and I keep as active every day to the extent that I can, and even past it, some.

So, today, the pain and weakness was very evident, and I had to avoid anything where I was using my hands.

Have you ever tried that? Of course, many of you know exactly what I mean. But when you can't type or wash the counters or pull weeds or hold a book or even a water hose, then there isn't much to help the time go by.

It's been a long day.

But...I am so thankful I have this appointment coming up. I'm so happy that someone looked at my imaging and saw something he could help. I can't wait until Sept. 16.

Followers of this blog have been down this road with me before. Same ol' story, different doctor. Different city.

I'm not jaded but I'm wary.
If I were cynical, I'd not arrange the trip.
But having been through what I have so far, it takes its toll in trust and faith in mankind.

Of the medical type.